Tuesday 31 May 2011

Thank You

After a day of shame less self promotion of my blog yesterday I received the largest number of hits I have ever had in one day, 100 to be exact. This morning things are zipping along nicely too with over 20 hits in the last hour. I am amazed at the response from Facebook, Neurotalk, Dinet, Twitter, UK Potsies and anywhere else I may have casually dropped into conversation that I have a blog!

This month I have had the largest amounts of hits on my blog since I started with well over 400 and we still have one day of May left!

Thank you for taking the time for read my ramblings and a very special thank you to those of you who were kind enough to leave comments. It means the world to me.

I found out yesterday through Twitter that May is Ehler-Danlos Awareness month so quite by accident I may have helped spread the word a little. I am just getting to grips with Twitter I am mainly self taught. My main problem is that the majority of things I want to say contain much more than 140 characters and the people I chat to struggle to keep up with my lightening fingers (if I am having a good typing day!).

When I started my blog in 2008 it was a way to vent my feelings about the hideous situation I was in. The incompetent Dr's and  a work place where instead of trying to support me, my colleagues and superiors went out of their way to make my life miserable. It was also a way to combat the loneliness and isolation I felt being stuck at home all day everyday after becoming ill.

In the first few years I wasn't a regular poster and it was very hit and miss. Its only really this year that I have fully embraced this world of Blog thanks to the support of people like my mum and Ellie my best friend.

My husband thinks its crazy that people from all over the world stop by and read my posts. He isn't really into the Internet he prefers his PS3! Everyday when he gets home from work now he asks "have you been blogging today?" and "how many visits have you had?" In his own way he is incredibly proud of what I have done.

I want to share a little of a text message my mum sent me last night when I told her that the activity on my blog had gone mental

" Really, really well done! But I can't believe the state of your feet!"

I know my mum is very proud of me and the way that I handle things but that text brought tears to my eyes last night.

So thank you again to everyone who has stopped by and taken a peek. I know I keep saying it but I truly mean it Thank you xx

Monday 30 May 2011

Blood Pooling

The blood pooling in my feet has been quite spectacular for a few days now. So I thought I would share a picture of my revolting tootsies! The left foot has been allowed to dangle for five minutes the right foot has been elevated during the same time. I would have tried to last a bit longer but my foot started feeling prickly! So now you can see the various colours my lower extremities go when not elevated.

Life being conducted from the confines of my bed!

So as you have probably realised from the last few entries of my blog, life well actually my health is on a bit of a downwards slide. Since Sunday I have been pretty much confined to my bed, walking, sitting and standing have become increasingly painful. I have one diazepam left and that will be taken when I can no longer stand the pain. However if the pain increases much more it will be taken sooner rather than later.

When I am walking I am finding it extremely difficult to weight bare on my left leg so I am now using my zimmer frame! Normally I furniture surf, but that requires two weight baring legs. Thankfully hubs is home so if I need things fetched from one room to another I am not completely stuffed. Holding onto a zimmer frame and carrying a cup of tea just doesn't work!

Lying still is the only way to keep my pain at a level where I can tolerate it. I am pretty confident due to the loss of power in my left leg I have a nerve being compressed. I also have a deep ache in my left thigh which feels like its burning deep within the muscle. I know that this is the sign of an irritated nerve as I have suffered with this since my back injury in the exercise class more than ten years ago. Its not massively serious as I still have control over my bodily functions. If I lost those then I wouldn't be typing this but taking a ride to the local hospital in an ambulance.

Paracetamol and tramadol are being consumed like sweets in this house at present. I have just hobbled to the bathroom to slather on more ibuprofen gel in the hope it will add to the level of pain relief circulating within me. The chili cream and I are  not getting on. Its not supposed to be used on broken skin, the area I need to apply it to has broken skin. I probably have an EDS related skin condition called Elastosis Perforans serpiginosum, its previously been misdiagnosed as ringworm - those treatments don't work and eczema its not that either. EPS, is a condition where the collagen is being broken down and pushed to the surface of the skin. More joy and yet another condition that will probably take me a while to have recognised as again its quite rare. It doesn't hurt, its prickly and a bit itchy. Its main issue for me is that cosmetically its not very attractive as when the area heals it scars leaving the skin darker than my normal skin tone.

Also the chili cream is leaving red blotches over my skin where its been applied. I am also having problems when showering the chili cream is being reactivated when coming into contact with water. It doesn't matter if the last time I applied it was 8 hours before, it still burns my skin. Its like eating the hottest curry you have ever eaten, you know eyes streaming, the inside of your ears burning and having that effect on your skin. I also had an accident with the cream last night. Despite washing my hands thoroughly after applying it I managed to get some in my eye. Not a joyful experience! In future I will be extra careful.

Although movement is hurting I am still trying to move around as much as possible once the pain medication has kicked in. I know its important to keep the muscles strong, its a vicious circle. So for the last two days life has mainly been conducted from my bed. Thank god hubs has been home to look after me and that I have the Internet to rant and rave on.

So I don't want this post to sound all negative as although I have been in a lot of pain I have still found things to enjoy. One of those things was finding out that my blog had over 1500 hits and the majority of those hits have come since February 2011.

I know many people read a blog  and don't leave comments but can I ask a special favour as a one off? If you are a regular reader could you just leave a comment even if it just says "hi, I read your blog and I live in the USA etc" It would be really nice to kind of gauge how many of you are regulars and how many just stumbled across me one day. I know its quite a big ask but it would really make my day and I don't ask for much! LOL

Rach xx

Saturday 28 May 2011

Prayer for Today.....................

Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
...The things I can,
And the wisdom to hide
The bodies of Doctors I shot
When they said,
"You're perfectly healthy,
It's All In Your Head."

    Thursday 26 May 2011

    medication update

    So I have had a couple of days of the diazepam and its done wonders for my back and pelvis pain, especially at night. I am no longer waking up in agony in the morning. This has got to be the first time in years that my sleep hasn't been prematurely ended by back / pelvis pain. The down side is that I am only allowed these tablets for 5 days due to them being highly addictive. After the five days is up I will be back at square one.

    My hip pain isn't being touched by the diazepam. I know without seeing the Dr I have a flare up of bursitis caused by walking for Lilith last week. My hips have been like this since 2008. As long as I keep walking to an absolute minimum my hips behave, anything above this and I am in agony. The worst thing is they will take months to settle.

    Due to not being on top of the hip pain I rang my GP today hoping that he would finally break out the big guns and go above tramadol and head into morphine territory, not because I am a junkie but from past experience I know that a few weeks on oramorph will actually settle the pain down. Unfortunately my GP and I do not see eye to eye on this. I can understand his position but I don't think he wholly understands mine.

    For the moment I have been prescribed a gel Ibuprofen to massage into my hips 3 times a day. He has also given me a cream that is derived from chili peppers. Apparently the cream confuses the nerves and disrupts the pain signals. The plan is that I am to put the ibuprofen gel on my right hip as this is the least painful and use the chili cream on my left hip and see which one works best. He said I may just have to wait it out for the pain to settle. Believe me I will not be doing that. If the pain doesn't settle I will be ringing him daily until he starts listening to me.

    At present the chili cream is out of stock at the pharmacy and they hope to have it in for me tomorrow. Once I have used it a few times I will let you know how I get on. My skin is very sensitive to chilli's so I am going to get hubs to get me some latex gloves as it will be bad enough with my hip and buttock burning without the palms of my hands joining in. It doesn't seem to matter how much I wash my hands after dealing with chilli's I can't seem to get its natural oil off my hands.

    I have quite a few years ago managed to get chili in my eye and oh boy did that smart!

    The GP  has asked me to come and see him for a face to face appointment to discuss Lilith's letter. I asked him if we couldn't just discuss it over the phone as a trip to the Dr's or the local hospital is causing me to be bed bound for 3-5 days afterwards. He then suggested I should wait until I felt better to come and see him. If you hear a thud its me banging my head against a brick wall!

    Thud, Thud, Thud......

    Its not his fault he is new to me and my situation, at least my other GP as crap as he was would come and do a home visit if he needed to discuss something with me. It was a rarity but he understood the damage these visits to the practice did. I think I may need to write to my new GP to explain things, I don't think I have been explaining myself very well and I forget that he doesn't have the time to sift through 37 years of medical history. Its frustrating but I need to find ways to help him to help me or at least meet in the middle.

    He did say on the phone that he felt Lilith's letter had been very good and I had obviously got a lot from the appointment - if you just exclude the back spasms and bursitis.

    I am finding it increasingly frustrating that no one in the medical field is taking the level of pain I am in seriously. It seems at odd with all the posters you see in all the accident and emergency departments where they urge you to tell a nurse or Dr is you are in pain. Outside a hospital environment it seems you are left to get on with it.

    Its a difficult situation I don't want to irritate my new GP who is on my side (well more than the last one) however I don't see why I should be in pain when there are medications out there that could resolve this.

    Tuesday 24 May 2011

    Quick update

    Dr has just rung and I have been prescribed diazepam ( Valium) which I have spelt wrong but at present not really that bothered!

    I am to take these three times a day for 5 days to see if this relaxes some of the muscles that have now started spasming.

    So if I'm not on here for a few days its because either a) I'm asleep or b) I'm as high as a kite.

    Thanks xx


    I have been suffering with an increasing amount of pain over the last few months and the last few days have been a complete nightmare. I am barely sleeping and I am waking up at around 6am in the morning shaking due to the pain I am in. I just can't get on top of it.

    Currently my pain is in my left Achilles tendon, both hands,both knees, my spine and pelvis. My spine and pelvis are what is waking me up in the morning. Usually a little gentle stretching and walking will loosen things up and make the pain subside. For the last two days this hasn't worked. Don't get me wrong I am not screaming in agony but every movement producing a grinding, gnawing pain. I can feel my hip bones grinding in the sockets as I move. My muscles are also aching and the pain is making me feel quite unwell and I am getting tearful at the drop of a hat. Which isn't like me unless I am on prednisolone!

    I have taken matters into my own hands today and rung the Dr's surgery and asked that the duty Dr ring me. I need something now to deaden the pain and I can't wait until Dr J my own GP is back in work tomorrow. If they fob me off I will take myself to accident and emergency, they wouldn't leave an animal in this kind of pain.

    I believe this cycle of pain has been started off by Lilith making me walk last Wednesday, the pain has got progressively worse since then. I tried to tell her it was a bad idea but she wouldn't have any of it.

     Yesterday my knee gave out whilst I was coming out of the shower, how my face isn't covered in bruises all the colours of the rainbow I don't know. Falling like that makes me feel weak and vulnerable. I haven't even mentioned to hubs as there is no point stressing him out over something he can't change. Ive been lucky this time there is no evidence of my fall! Otherwise I would have had a bit of explaining to do.

    I didn't need to contact him at work as I had a friend coming around for coffee about 30mins after my little escapade. I wasn't going to be alone and to be honest I prefer to cry on my friends shoulders rather than hubs. Not that he is unsympathetic, he really gets my frustrations its just it puts more stress on him that he doesn't need. He already has it pretty tough with holding down a full time job and looking after the dogs and me. I admire him so much for coping with all of this. People don't realise just how much he has to do and it is done without complaining and with a sense of humour. He has the ability to turn the darkest moment into side splitting laughing attack. Its a quality he shares with no one else and I love him deeply for it. Don't tell him though as it will go to his head.

    There are millions of husbands, wives, mums, dads, brothers and sisters balancing their own lives whilst tending to the needs of their chronically sick nearest and dearest. They are an unpaid, unrecognised, voluntary organisation that receive very little thanks or recognition from the outside world. So to all you carers out there I salute you and thank you from the bottom of my heart. xxxx

    Saturday 21 May 2011

    Got to laugh............................

    Well you have to have a good laugh especially after the letter I received from Lilith, as hubs and I are calling the Rheumy I visited on Wednesday. She was so devoid of human warmth or personality that we named her after Frazier Cranes wife!

    I wasn't hopeful that her report would be particularly nice reading. I expected her to say that I wasn't doing enough to keep my joints strong and my weight was causing the issue. You could have knocked me down with a feather when I read her letter. It was a typical Dr's letter but at the top it read

    Diagnoses: General Joint Hyper mobility (possibly Ehler Danlos Syndrome type 3)
    Possible Myasthenia Gravis

    I have highlighted the bit that made me laugh the most! Her reasoning behind why she felt I had Myasthenia Gravis, that's because I respond to pyridostigmine bromide (mestinon) and I turned up to the appointment with the right side of my face looking like I'd had a stroke and my right eye closed with ptosis. She told my GP to refer me back to my old neuro! Laughed I nearly fell off my chair. He's going to be so thrilled to have me back on his books. I am expecting he will hand me off to a registrar or colleague rather than have to deal with me again. After all it would be a bit embarrassing to have to deal with the lady with numerous conditions after you gave her a clean bill of health 12 months earlier! After writing in her notes its all in her head.

    That's what is quite good about living in a small area (and what can be quite bad about it) there's only one hospital in my location and one neurology team that I can be referred to. So all his colleagues will know I have been his patient previously.

    I had been beginning to think that maybe I had chosen the wrong name for my Blog and it was an act of fraud masquerading as the myasthenia kid. I had been contemplating changing the name, what to I had no idea. The name just didn't sit well with me anymore.

    Outside the world of Blog at medical appointments and the like I didn't mention the condition Myasthenia Gravis. If anyone asked me about my facial weakness and ptosis I would just say no one knows what causes it, but it responds to pyridostigmine bromide (mestinon) and leave them to draw their own conclusions. I believed I would never actually find a name for what was causing my ptosis, facial weakness and my ability to choke on my own saliva at frequent intervals throughout the day. I sought other answers for why this happened but nothing really explained why I responded to mestinon. Don't get me wrong I'm not considering one Dr's opinion a diagnosis, after all neurology is not her speciality. Its just really made me laugh that the diagnosis of MG has reared its ugly head again.

    She notes in her letter that I have hyper mobile fingers, knees, spine and wrists. I didn't realise that your spine could be hyper mobile, I know it causes me pain  and its obviously a series of joints but I had never even considered it. Also my scar from my operation to remove bowel adhesion's in 1998 is tethered - I don't know what that means exactly all I know is it looks a bloody mess. Plus I have traumatic scars on my knees! Sounds dramatic doesn't it? All it means is that I like to fall down .... a lot!

    She informs my GP what medications to put me on gabapetin (that may be spelt terribly wrong but I am really tired so please excuse me) for nerve pain to try and get it under control. I am also being referred for physio as we know already.

    So what she lacked in personality and warmth she made up for in her letter. Its a clear concise report with no Dr double speak and nothing to be read between the lines. It has a couple of errors such as she has made my weight 20 kilos lighter than it actually is. That was a bonus! Until you read the next sentence that says I am overweight! I know I am but how am I supposed to lose weight? I barely eat due to the gastroparesis and movement causes pain or fainting? I'm hardly going to nip out for a jog.

    So presently the joints are still sore but the wallet isn't hurting so much.

    Friday 20 May 2011

    latest update

    Thank god its Friday, its seemed like a very long week and I am exhausted. Two Trips to the local hospital have wiped me out. Yesterday I had a three hour nap in the afternoon and went back to bed at 1730. I slept for eleven hours only waking up once at 2am when it started raining and it reminded me I needed to go to the toilet!

    My fludrocortisone has been increased to two tablets a day as my blood pressure at the consultants office was 105/60. In the normal range but low if you take into account by weight, height and age. The consultant who is extremely funny said "your blood pressure has reached the dizzying heights of 105". He would like me to go back onto mestinon regularly as it increases your blood pressure on standing, however he is doing some research to see if he can find a drug I can take that will help me tolerate it. I used to take propanthaline, with the gastroparesis this kind of drug is no longer allowed as it slows everything down. Mestinon speeds everything up digestion wise so its quite good for gastroparesis, I just find the side effects too much.

    The consultant didn't seem to find the idea of loads of physio and hydrotherapy such a brilliant idea. He told me my POTS was too unstable at the moment to be entertaining such an idea. He then dictated a letter to the Rheumy I saw Wednesday saying he must be involved in any plans she had. I did tell him that I felt she had absolutely no idea about POTS and was worried that in her ignorance she could do some damage.

    Their two approaches are completely different, POTS man won't allow me out of my wheel chair in his office. Rheumy lady made me walk the furthest I have walked in years causing me immense pain and shortness of breath. When I complained I was told "just because you are in pain it doesn't mean its doing damage". Tell that to my hips and back that have been in an elevated level of pain since you made me do that. At a cost of over £4 a minute she has not only hurt my wallet but my body too. I should have been stronger and said no, however non compliance never goes down well in the medical world. You become an attention seeker or mentally ill if you refuse to do something.

    I have taken my pain killer cocktail today 2 Naproxen (250mg each), 2 paracetamol (4 hourly), 2 Tramadol (6 hourly) and I am still hurting. So the pain is at a five, my back has seized up and is going in and out of spasm. My wrists and hands hurt and my head is refusing to support my neck. I know I need to exercise to strengthen the muscles I'm not disputing that. What I didn't need was to be forced to run a marathon on the first day. OK so it was a walk down the corridor but it felt like a bloody marathon. Not only that but she followed me so I couldn't get back in my wheel chair the minute her back was turned which was the plan because I knew the amount of pain I would be in.

    When I get pain like this its not only the joints but my internal organs feel like they have moved. Its a bizarre thing to say but its the only way to describe it. When my chiropractor used to manipulate my pelvis as it rotates of its own accord I was left with the same churned up feeling inside, like everything was in the wrong place.

    My old chiropractor called Heather was brilliant, one of the nicest people you could ever meet. Unfortunately she moved her practice out of my town and now its too much for me to travel and see her. She kept saying years ago when she treated me that there was something very wrong with my joints, due to the way the manipulations never held and my back would just seize up so I couldn't bend. She discussed it with her colleagues but they didn't have the medical knowledge to know what it was. I brought it up with my GP at the time (the one my mum gave it to with both barrels) unfortunately he thought chiropractors were just one step away from witch doctors on the alternative medicine scale. So it went no further.

    Since the EDS diagnosis all I have done is cringe at all the damage I have done to myself. I was incredibly active, much more active than any of my friends. I loved doing exercise video's, running, walking, playing tennis and netball. When I hurt myself I would work through the pain. In 1999 I really damaged my back at an exercise class. We were doing the warm down and I was relaxing lying on the floor doing a stretch and then there was a massive crunch and I couldn't move my legs. The crunch was so loud that several people sat up and turned around. That was the injury that really screwed up my back ........done in the warm down. I had slipped discs before but this was something else. I tried to carry on but I couldn't put my legs back flat on the floor when lying on a hard surface. I went to work the next day but came home a few hours later sobbing as the pain was so intense. I remember my sympathetic female boss at the time telling me to "suck it up and stop acting like a baby". I was in agony and didn't know what to do with myself.

    My back has never been the same after that injury. The GP told me I had slipped a disc and to do some gentle walking. I have been left with bouts of nerve pain down my left leg where it burns or the skin becomes so sensitive I can't stand anything touching it. I have been back and forth to the Dr's telling them I am in pain and just got handed pills. I was around 25-26 years old and I guessed they just presumed I was young and fit enough to shake it off.  That's over ten years ago and I am still suffering.

    The EDS diagnosis has also made a lot of sense. Of course I knew that I had it, I've known for about a year after joining various forums and looking at the Beighton Scale and the Brighton Criteria. I had always thought I was a wimp when it came to the dentist, I would be pumped full of local anaesthetic and it would still hurt, despite the dentist telling me it couldn't. I thought it was all in my head, that it didn't hurt it was just my fear making it hurt. You will tell yourself all sorts of things if someone in the medical profession is telling you it doesn't hurt.

    So now I just await my torture sorry I mean physio appointment and see what they can do for me. Unfortunately it means more trips into the local hospital and more exhaustion, before I have even attempted to make my muscles stronger. Its a vicious circle but I need to do something. Even if the rheumy said she doubted that they would get my pain under control.....thanks for that love I'm 37 the chances are I will live until I am at least 80. So if I manage that I have another 43 years of pain to endure. I think I am just going to have to take it one day at a time!

    Wednesday 18 May 2011

    Just a quick one!

    Saw the Private Rheumy today £250! worked out at over £4 a minute!!!

    I finally got my diagnosis of Ehler Danlos Syndrome Type 3!!!! In a weird twist of fate my sister also got diagnosed today. Its strange enough we both had appointments with Rheumy's today but to get the same diagnosis BIZARRE!!

    I am tucked up in bed and doped up to the eyeballs as every joint in my body hurts after doing my contortionist act for the Dr.

    Sorry this is a short one but I am at the hospital tomorrow to see my POTS team. The journey will be horrendous as the Devon County Show starts tomorrow so our sleepy town will be gridlocked. We are leaving at 815am, the appointment isn't until 945am! That's how bad it will be.

    Tuesday 17 May 2011

    Just for Fun

    This is tongue in cheek and just a bit of fun. I am typing this whilst waiting for a home visit from a GP.

    Things that make you realise you are sick:

    You Know Your Sick When .......

    1. Your mum can tell what sort of day you are going to have by the tone of your voice when you ring her in the morning.

    2. You only shave your legs / armpits for hospital or Dr appointments.

    3. You need a carrier bag to take you medications anywhere with you.

    4. When your husband rugby tackles you to the ground as he knows by your glassy eyed stare that you are about to faint.

    5. When your husband rings the GP practice and asks for a home visit and the Dr's receptionist doesn't bat an eyelid.

    6. When the pharmacy staff no longer ask to see your medical exemption card for free prescriptions.

    7. When the dog is puking on your bed at 1am and you shove your hands under his mouth to catch it rather than let it go on the sheets, as the thought of having to change the bed makes you cry.

    8. When the Consultants on the Emergency Medical Unit at the local hospital know your name and pop by to say hello!

    9. When the paramedics turn up and know your name!

    10. When you know your pulse rate without measuring it.

    11. When you clean your teeth six times in three hours as you don't remember doing it the first time.

    12. When friends and family know what you mean despite the fact you have said the wrong word....again. For example I called a tractor a helicopter recently.

    13. When market researchers phone you and you are more than happy to take part in their short survey as its the only human contact you have had all day.

    14. You regularly check out the disability aids on Amazon to see what cool new gadgets they have.

    15. You own a pulse oximeter and a blood pressure cuff.

    16. You are a member of more than one health forum.

    17. You become irrationally pissed off with people when they moan they have a cold.

    18. You do as much as you can to self treat rather than call the Dr again.

    19. You have an unlimited amount of carrier bags in the car so you can puke discreetly.

    20. Your standard item of clothing becomes sweat pants or PJ bottoms.

    21. When you haven't washed your hair for four days, let alone put a comb through it and you don't care!

    22. When you read articles in the newspapers warning you about the levels of salt in food and actively go out and buy them.

    23. When you tell the Dr what your care plan should be and they agree with you.

    24. When your friends and family seek your advice on medical matters.

    25. When you know the complete programming schedule of Radio 4 Extra.

    26. You no longer criticise your husbands feeble attempts at housework because you are just so grateful he's done it.

    27. When a chemical toilet in your kitchen doesn't disgust you.

    28. You read a book and 3 hours after you have finished it you can't remember what it was about and who the main characters were, so you read it again still none the wiser.

    29. When you could quite easily turn in for the night at 1600 hrs.

    30. When a Russian Doll hot water bottle becomes your favourite gift of all time.

    Do you have any of your own that you could add to this list? I was only going to write ten and it was amazing how many came to me.

    Sunday 15 May 2011

    Been without the Internet for 48 hours

    As the title says I have been without the Internet for 48 hours due my husband our our neighbour P redecorating our spare room - actually hubs bedroom. My router is plugged in there so hence no Internet, it was OK no withdrawal symptoms! But I have had a few people worried with my lack of contact for which I apologise. It was a spur of the moment thing a new carpet needed to be laid and as all the furniture came out of that room it was decided that it should be redecorated. It hadn't been touched since 2004 and it was looking awful. Due to the walls being a sort of mid blue, it took several coats of paint to get it to magnolia! I did a few little bits that I could do sitting down but I am paying the price now.

    As I had suspected for a few weeks now my gastroparesis is entering a bad phase after having been pretty good since October 2010. I have started vomiting again not just feeling nauseous and despite taking anti sickness meds a few hours ago I have already had my head over the kitchen sink. Its a nightmare as quite a few of the drugs I am on need to be taken with food and I can't even think of food when I am like this. I even struggle to drink because the thought of swallowing anything makes me gag. So I have taken myself up to my bed and I am not going to think about it for a few hours and hopefully it will settle.

    Even though when I am at a peak of a flare and vomiting several times a day I have to remind myself that I have this very mildly. Some people have to be fed by tubes directly into their stomachs or they have to have pacers put it which electrically stimulate the stomach to make it contract. I am very lucky, yes its horrible to be sick but I don't have this day in and day out. My stomach works in fits and starts some peoples stomachs have completely stopped working.

    The last few days I have struggled to keep myself warm, I have been stuck downstairs whilst hubs and P have been decorating. Due to the small size of the house the contents of hubs room has been in my room which has meant no bed rest for me. Although I have bed rest everyday I had no real idea how much I needed it. Plus its where my electric blanket is so when I am struggling to maintain my body temperature I lie on my electric blanket. Body temperature is always an issue for me if I get over tired I end up shaking because I am so cold. My hands have been an interesting shade of blue for the last couple of days. I only ever feel warm if I am in direct sunlight or lying on my electric blanket. Hubs and I laugh and say I am like a reptile basking on a rock.

    Hubs is home on holiday for the next few days he has gone to visit his family who live an hour away today so I am home alone. Its quite nice after the hectic pace of the last few days just to have a bit of space and not having to pretend that I feel better than I am.

    There has been a problem with Blogger for the last few days, I noticed a problem Thursday night when I couldn't access the stats page, today I have noticed some comments have disappeared and I have had to re- publish comments that have been authorised before. So if your comment has disappeared it wasn't me! I am hoping that Google have sorted this out now. Hope you are all having a lovely weekend.

    Wednesday 11 May 2011

    Unexpected hospital appointment

    I really didn't sleep too well last night and as a result feel shaky and out of sorts today. Last night I was so thirsty I downed 3 litres of fluid between 8pm and 6am. I do drink a lot but even for me that was pretty good going. I spent most of yesterday in a great deal of pain and the medication only took the edge off. I am just so tired today I don't know what to do with myself.

    I have a unexpected hospital visit tomorrow. The gastro clinic rang at 9am yesterday asking if I could attend an appointment on Thursday so I accepted. Apparently they have been so busy they have been opening extra clinics and running extended sessions. I am hoping I have been booked in with them and not a surgeon which happened on the last visit. Which was a waste of his time and mine.

    I am now panicking about what to wear and finding the energy to shave my legs as it is more than likely that I will have to strip off for this appointment. I am also concerned about what sort of state I am going to be left in after the appointment. I am really having a tough time of it at the moment and I will be sitting upright and legs down for hours tomorrow.

    I have to repeat the process again a week tomorrow as I will have my appointment with my POTS consultant or his registrar. So I will have just got over the first visit and will end up doing damage again.

    I have told hubs that if I am cold I will be taking a hot water bottle with me. I have a small Russian doll hot water bottle that I will be able to smuggle under my clothes to keep me warm. Ellie got it for me last Christmas and I have to say its one of the best practical presents I have ever had. It gets used every day. Its nice and small so its light and easy for me to keep with me. It genius I can't praise it enough!

    I am stressing out that tomorrow they will tell me I have IBS as I am currently going through a good period with my tummy. I still can't eat in the mornings, I feel full still from the night before. This is posing a problem with taking my tablets as they all have to be taken with food. This morning I bit the bullet and drank a glass of milk. I hate milk, I am surprised it actually stayed down, if I had been nauseous it wouldn't have done. Luckily this morning I wasn't feeling sick I just wasn't hungry or interested in food.

    I am still vomiting at least once a week that level of vomiting I can deal with. Last summer it got to the point where it was every day and a couple of times a day. I lost a stone in weight which was great! Now however the weight has all gone back on because I am able to eat again. Plus I am on the florinef and that makes me retain fluid, my weight can fluctuate daily by 7-10lbs.

    I have managed to keep my weight pretty stable and the weight is water, you can tell by my ankles and hands getting puffy.

    So lets see what tomorrow brings ..... watch this space!

    Monday 9 May 2011

    Please Feed The Fish and other such nonsense!

    I had a little play around with my blog earlier and have changed things around a little bit. You may have noticed that there is now a twitter update for me, a list of blogs I am following, plus some fish swimming aimlessly about. Please feel free to feed the fish! All you need to do is click your mouse on their pond and bits of food will be left there! This starts a feeding frenzy they are actually quite relaxing to watch.....that sounds a bit sad.

     I'm not very good at keeping real fish, all the ones I had a kid tended to die from fin rot, so sooner than we had intended they all took the last flush to fish heaven. It used to really upset me that these fish died in my care. I'm good with furry animals like hamsters and dogs, it seems fish and house plants were never meant to do well in my care.

    I thought I would share a couple of pictures with you that were taken earlier today. I've often talked about my early warning system Frankie and how when I am particularly rough he stays with me. As I am typing this he is at the end of my bed asleep. He has a habit that around 3 days before I crash he will stay with me constantly until I pick up again. For the last week or so he has been like my shadow. today however mummy Mollie got involved and she wouldn't leave my side until Frankie took over. I didn't have my mobile with me at the time so I couldn't get a picture of her. I did however manage to catch Frankie.
    Frankie on duty
    This is Frankie fast asleep on my feet this afternoon whilst I am lying on the sofa! He has to be touching me when I am ill so he knows when I get up so he can follow me! The girls had put themselves to bed for an afternoon nap and normally Frankie would have followed them. Today he stayed with me from 1500-2200 just sitting on my feet making sure I was OK.

    Mum moves I change position!
    Obviously at some point in that seven hour period I moved, that's OK Frankie had it covered! I changed from having my feet on the sofa to moving them to the coffee table. Frankie just moved and lay his head on my lap. He is one soppy dog! Its such a shame that he is so scared of other dogs that he gets all barky and silly when he meets them. He can be very loud when we have people at the house, he's just doing his job protecting his mum, give him a carrot and hes your friend for life!

    I thought I would also show you pictures of a couple of plants in the garden that are doing well in all the sunshine and showers we have been having.
    Pink Broom
    Sorry the picture is a bit out of focus as the wind blew! They are quite small pink flowers but very vivid so its a nice bit of colour in the garden whilst we are waiting for the Lobelia and Begonias to grow.
    Again another out of focus photo! My eyes haven't been brilliant today but I hope you can gather its like a giant daisy. Ive always loved Marguerite's and this one my parents bought me last week end its more than doubled in size in the last week. It was very pot bound when it was re-planted so its roots are probably squealing with delight.

    I know two posts in one day! I wont be on tomorrow as Hubs is day off and I will be spending time with him rather than being on the computer.

    Thanks for reading xx

    I'm not on a downer.......but this post may sound like I am! - I'm just sick of being sick!

    So just when you think life with this crazy illness couldn't get any worse it manages to surprise you yet again.

    Last night I ended up with double / bilateral ptosis http://en.wikipedia.org/wiki/Ptosis_%28eyelid%29, see the guy on the right hand side of the page in the black and white photo, he has unilateral ptosis meaning one eye. Both mine went last night with very little warning. My right eye had been looking lazy all day, the lid line was actually through my pupil. It had affected my vision all day making it blurry and totally destroying any depth perception I had. Then by 1830 last night my left eye tired of being the only one open  joined in. At this point I conceeded defeat and went to bed. Hubs brought my dinner up to bed, luckily I could just see through my lashes on my left eye and managed to find my dinner. He implored me to take my Mestinon - Pyridostigmine Bromide 60 mg tablets, you know the ones that the drs tell me just make me feel good but don't actually open my eye. He even threatened me with ringing my mum......I know he is desperate when he threatens that. I declined and told him my stomach wasn't going to tolerate mestinon as it has been dodgy all day. I was quite happy to go to sleep and see what it was like in the morning. He didn't ring her.

    At 5am this morning I was pretty pleased that I hadn't taken the Mestinon, if I had things would have been an awful lot worse. I was jolted awake with a gurgling stomach and one telling me that I was going to have to get to the bathroom quick. Luckily I made it but I was pretty poorly. Mestinon can give you diorhea, really awful diorhea. It was bad enough without the mestinon in the mix. I lay in bed until 7am and gave up trying to sleep as every time I had just dropped off I needed to go to the bathroom again. My back and pelvis were hurting also, after being in bed the best part of 12 hours. I wandered down stairs sat at the back door and the ptosis that had resolved over night happened again. Thankfully just the right eye as it normally is.

    For 90 minutes I tried to decide if I would take mestinon or not. Mestinon can also make me vomit so its a tough choice I can have reasonable vision or spew out of both ends. Its not a decision to be taken lightly as I was already feeling nauseous. I decided that hubs was under enough stress with having to go to work late night - leaving me until after 10pm. I owed it to him to have some decent vision if I was going to be alone from 1pm. So I took my mestinon cocktail, 2 loperimide, 2 domperidone and a mestinon.

    Within 45 minutes the mestinon (that we all know doesn't work - heavy sarcasm) opened my right eye, but the vision has been left blurry and my eyes are not tracking things properly. I was watching a Heron fly over and my vision was just jumping seeming to be unable to track in a fluid motion. It was like watching a DVD that kept sticking.

    Fast forward a few hours and I am puking on the patio. I was at the back door talking to hubs as he did the dishes and suddenly I had an overwhelming urge to vomit. Knowing that these days I am not speedy there was no way I would make it to the bathroom. The patio seemed the next obvious choice. Poor hubs he has such a weak stomach, he can puke just with having to clear up after the dogs.If any of you have seen Jackass, hubs is like the camera man that pukes all the time. Hubs just has to hear me being sick or one of the dogs being sick and he just has to jump on the band wagon and join in.His stomach seems to have got weaker with age. Its actually become quite funny if I am feeling particularly wicked I only have to make retching noises for him to start vomiting!

    Hubs was a star this morning, he carried on doing the dishes and then handed me a large plastic bowl that we use for occasions just like these. Unfortunately me puking isn't that uncommon. He stayed just feet away from me in the kitchen pretending to clear up whilst keeping a close eye on me. When I finished and asked for a glass of water he just said "Those anti sickness meds work a treat don't they". Humour is what we always use to get ourselves through days like today.

    I have a banging headache, my stomach is cramping from the mestinon and despite taking another dose of the anti sickness meds I feel like I could hurl at any minute. I text messaged my next door neighbours to apologise for the noise of me being ill on the patio. Thankfully they are understanding and it isn't the first time it has happened. Damn these terraced houses and living so close to each other that you can't even puke in your own garden without the whole road hearing!

    So hubs has gone off to work and I am resting on my bed. This mornings antics have thoroughly exhausted me. I have no idea what my pulse or blood pressure is like today as I haven't had the opportunity to measure them. As long as I am still tapping away on the lap top I am conscious and alive!

    Saturday 7 May 2011

    A new day.....

    After yesterdays downer I thought I better post and let you know that I am OK. I am still in pain although its not as intense, I have a thumping headache but that is either due to the heavy doses of pain killers I have taken in the last 24 hours or due to the very thundery weather we are experiencing here at the moment.

    Last night we had a thunder storm the like of which I haven't seen for years and years. It had been very humid all day then suddenly at around 7pm the temperature shot up again. The rain was unbelievable and reminded me of the monsoon rains in Sri Lanka. My husband and I were married there in 2000 at the end of the Monsoon season and boy can it rain, even at the end of the season!

    http://www.kuoni.co.uk/en/holiday/indian-ocean/sri-lanka/sri-lanka-beach/southwest-coast/accommodation/pages/heritance-ahungalla.aspx this is the actual hotel that we got married at, although it was known as The Triton Hotel before the Tsunami. It was one of the most beautiful places in the world that I have ever visited and to return there is on my bucket list!

    The dogs were terrified, Mollie took herself up into the bathroom and hid in the shower cubicle. When she is that bad there is no point trying to comfort her she wants to be alone and in the dark. Willow was so scared her teeth were chattering, its the strangest noise ever. She spent the evening trying to climb onto my lap, not good when you are in pain with your hips and back. Frankie paced around the lounge a lot and pretended to be scared to get a chance of cuddles. He wasn't that stressed though as whilst I was calming willow down he stole my cup of tea!

    There was forked lightening last night and sheet lightening. We were very lucky as although the windows were shaking with the volume of the thunder we didn't have anything directly overhead, it was all a few miles away. The forked lightening was weird as it was running horizontally through clouds rather than hitting the ground. I love thunder and lightening and could sit and watch it for hours. I never get the chance now as I end up having to comfort the dogs. Its very strange as when they are out for a walk thunder and lightening doesn't bother them, its only in the house they become hysterical.

    Last night whilst hubs was working I decided to treat myself to watching a few episodes of Supernatural to cheer myself up. It did the trick although I ended up pausing it a lot and had to whizz it back when Frankie stood on the remote control and managed to hit the fast forward button.

    I guess I am fed up at the moment as I have started medication for my postural orthostatic tachycardia but there is no improvement. I have been on Florinef ( a type of steroid) for well over 4 weeks now and all I have to show for it is daily headaches. My blood pressure is a little more stable although it hasn't raised significantly. Nothing has really changed, I knew no one would be able to wave a magic wand and make it all go away. What distresses me most is that I feel like I am getting sicker, I used to be able to do a few things around the house and I am simply unable to do them anymore. Slowly bit by bit my independence is being eroded. I am in the prime of my life yet like grains of sand it is slipping through my fingers. Its so frustrating that enjoying myself last week has caused me to be so ill this week.

    I also have some forms to fill in to state the severity of my disability and thinking about it is just depressing me. To acknowledge the very little I can do and the amount of help I need to live a not even normal life. It is painful and starts of the grieving process again for all the things I have lost.

    Just lying on the bed typing this has sent my pulse to 110 bpm!!! Yep my heart is loving the disco dancing. This spontaneous tachycardia is so exhausting, its like I am constantly running on the spot. Most people would be tired after running a mile or even a few miles. Imagine running everyday from the minute you wake until the minute you close your eyes to go to sleep.

    Some good news ..... the garden didn't need watered last night and my broom has come into bloom and looks really lovely. It adds another shot of colour into the garden. The Clematis that I thought I killed last year has grown around 12 inches in the last two weeks. I have managed to almost kill this Clematis twice now and it keeps bouncing back, I really don't have green fingers and I struggle to even keep house plants alive. The Lobelia and Begonias are all growing and last weekend my mum and dad bought me a Marguerite. This has doubled in size since being potted on. The Passion Flowers are also growing and are needing to be tied back every few days.

    I forgot to say that last week whilst sitting in the garden early one morning I heard a Cuckoo - I maybe repeating myself here as I truly can't remember if I posted this or not, I know I meant too. I have never heard a Cuckoo anywhere other than the common in all the years I have lived here. To be able to hear one from my back garden was amazing and it made my day.

    The weather here has got very muggy again and the sky is turning very dark. I am hoping that we don't have a repeat of yesterday, I don't think I have the energy to cope with three stressed out dogs again.

    Thanks for listening xx

    Friday 6 May 2011

    Dysautonomia, a really crappy hand to be dealt

    I will be honest I am fed up with all the crap that goes along with dealing with this illness. I would love one day to wake up feeling well, rather than this constant level of crudiness.

    Today I am in pain, I'm having a HS flare and moving my head is making me feel spaced out. My pulse is still doing its disco dance. I actually want to get off this roller coaster ride and have a break.

    I have been looking for support groups on face book and twitter but I am on such a downer I can't take anything in today. I hate it when I feel like this. At least hubs will be on holiday from work soon and I will have a bit of company for a while.

    I don't know why I started this post, its a pity party and I don't throw those.

    Thursday 5 May 2011

    My Latest Adventure Part Two

    Sorry there has been a bit of a gap between postings. I had hoped to write part two yesterday but I was so exhausted I only briefly went on the lap top yesterday. Basically out of 24 hours I was awake for 8 and out of bed two. Thank goodness hubby took the day off work yesterday to look after me I was fit for nothing.

    So last night I slept for 13-14 hours, I would love to report I woke up feeling as fresh as a daisy but I didn't, I felt like an extra in the movie night of the living dead. I thought a cup of tea would wake me up, it didn't! I am actually more awake at 2030 than I have been all day! I hope I can still sleep tonight.

    I just need to say a quick thank you to the following people for their messages making sure I was OK, ASL, SE, YC, EG, AF, AK, TMT, JH, ST Rachel and Hilary (and probably a few others that I have managed to forget for which I am sorry). I am OK I am just doing a Rip Van Winkle impersonation at the moment!

    I can't remember if I told you that they asked - the ambulance crew- if I had been taking elicit substances! I did have a chuckle if I had been doing coke or speed I would be a good deal thinner than I am. I also got asked if I had drunk a lot of coffee or red bull. All perfectly reasonable questions and logical but I can no longer drink coffee as it makes me sick, I have no interest in drinking red bull and I limit the amount of cola I drink as that makes my tummy hurt. So there were no obvious reasons for my spontaneous tachycardia.

    In Majors I was monitored continuously my heart rate dropped below the official 100bpm that signifies tachycardia and stayed in the 90's which is still too fast but is considered the top end of normal. Any movement even just flicking my hair out of my eyes was making it jump to 110 bpm. Because I was on complete bed rest I knew that my heart would slow down of its own accord, that's fine but what do you do when you get home? Life is already severely limited for me I don't want to become completely bed bound.

    I had a chest X ray and that was clear and my bloods all came back clear for infection. So with the clear ECG there was no obvious reason for my heart to decide to disco dance. Thank fully being confined to bed was easing the chest pain. The only pain I had was my arm being crushed every time the automated blood pressure cuff went off. My blood vessels are so fragile I have vertical lines of blood blisters where the cuff has been.

    At around 1630 I got admitted onto a ward, not a good one. Its called the emergency medical unit. Basically a dumping ground for people too sick to be released but not sick enough to get straight onto a specialist ward. I was the youngest person there by about 40-50 years.

     As I was wheeled to my bay the woman next door told me to "F**king clear off" and started throwing her personal belongings at me. She obviously was suffering from some sort of dementia, normally I would have been sympathetic and patient but I was feeling lousy and didn't want to play. I turned to the nurse and said "If I am next door to that all night I will abscond" and I meant it. The woman started throwing the bed side curtain at me and swearing again. I am not proud to say but I lost my rag with her, I felt dreadful, the stress of being next to this abusive woman was sending my heart into the 130bpm range.

     I waited until the nurses left and lent forward and had a few very stern words with her, along the lines of throw anything else at me and I will smack you one. It was a bit more colourful than that and I am a bit ashamed I spoke to her like that but I could see she was eyeing up her folder of nursing notes as her next missile and that would have hurt! My talking to her actually worked and she went to sleep. Around 30 minutes later an ambulance crew came to her and packed her up taking her to the nursing home. As she left the ward she turned the air blue with her swearing!

    Just as I thought it would be a bit quieter a woman called Una, who was in the bed diagonally across from mine came up sat on the end of the bed and asked me what train I was waiting for. I started laughing as I hadn't been expecting that one and told her it was the London bound one. She told me she had been waiting for a train for ages and that her husband would be worrying about where she was. She was all over the place as some of the time she said she was 7 years old and that I was an old lady and then the next minute she was talking about her husband. She wasn't aggressive or violent she was just confused and scared. I could cope with that, I couldn't cope with things being thrown at me when I was strapped up to a monitor and couldn't move.

    I don't know what is happening with this post but this is the third time I have had to edit it due to disappearing paragraphs!

    To cut a long story short Una decided to pretend to take her meds and then throw them behind her bed when the nurses and care assistants left. I informed the nursing staff about what she was doing. When they moved her bed they found a pile of pills on the floor.

    Una wasn't aware that I was the one that had given the game away or she didn't appear to realise. I didn't hide the fact that I was telling the nurses. They were much more diligent when they gave her the replacement tablet. She was observed taking the tablet and then made to open her mouth and lift up her tongue. I have the feeling that Una was just terribly lonely, every time she had the opportunity to get some attention she went for it. She refused to eat so one of the nurses fed her, she refused to drink so a nurse helped her drink. She was capable of doing both, how do I know? I watched her help a very ill lady by feeding her and helping her drink. What ever her motivations Una was fundamentally a nice little old lady and a bit of a wily old bird. It was entertaining.

    By 1900 I had had enough. I saw a Junior Dr and explained to her I felt fine and that I should be discharged as they would do nothing over night other than observe me and release me in the morning. I told her I could do the observations myself and that they should refer me as an outpatient to cardiology to have a Holter Monitor fitted. She seemed quite amused that I came up with my own treatment plan, but I knew that would be the only way I was going to get discharged! Within a few minutes her boss came over and he said he agreed with my plan and that I could go. He then spent 20 minutes talking to me about autonomic dysfunction, he also told me he felt that I had ocular myasthenia gravis. I had met this guy in 2009 and he wasn't particularly pleasant towards me, he was obviously under the impression that there was nothing wrong with me. Now I have a diagnosis, it maybe one that he had never heard of and he had to google, I am a proper patient. He informed me that he thought I had wide spread problems with my autonomic nervous system. I was quite taken back as normally the Dr's I deal with treat me with such disdain and with a complete lack of respect. This trip to hospital had been a bit of an eye opener!

    Tuesday 3 May 2011

    My Latest Adventure!

    Sorry I haven't posted since Friday but I have been very unwell culminating in me being admitted to hospital yesterday for a few hours.

    I was pretty exhausted after all our Royal Wedding fun and to be honest it was a price I was willing to pay, just to have a bit of fun for a change! Friday was wonderful but I don't know if I want to go through the last three days again. Everything with me has to be worked out in a kind of profit and loss way. One day of enjoyment (profit) may amount to several days, sometimes weeks of ill health (loss). Unfortunately on this occasion I hadn't estimated the amount of loss I would have.

    Saturday morning I woke up feeling pretty rough, which was totally expected. I hadn't slept very well due to the sheer amount of adrenaline floating around my system. I had about 6 hours sleep, when I normally get between 9-12 hours. Anything less than that and I find it incredibly hard to function. I decided that Saturday would be the day that I would catch up with all my TV programmes that I had recorded over the last few days.

    On Saturday afternoon I started to feel quite strange. My chest really ached, I felt very dizzy and a bit shaky. I drank loads of fluids and eventually decided that I better go to bed and have a lie down before I fell down. On climbing the stairs all I could hear was my heart thumping away and I became extremely short of breath. On getting into bed and pulled my pulse oximeter from my bedside drawer and took my pulse, it was 170 beats per minute (normal is 60-80 beats per minute) my oxygen saturation was 95%. No wonder I felt so ill, the pain in my chest was more uncomfortable than sharp and the pain wasn't travelling along my arm or into my jaw so I wasn't overly concerned, just a little perplexed. As I lay in bed I became acutely aware that my heart rate wasn't going back to normal (for me is between 70-80 bpm). I had palpitations and I could still hear my heart whooshing in my ears. I measured my pulse again and it was sitting at 115 bpm.

    Over the next few hours I measured my pulse every 15 minutes or so. It was still in the hundreds and any movement - even turning in bed was making it jump to over 120 bpm. I knew in my heart of hearts I really should be calling the out of hours Dr's but as me and the medical profession don't see eye to eye.......(see previous posts to get accounts of prior encounters and you will understand why) I decided to leave it and see what happened. After about 3 or 4 hours my heart rate dropped into the 90-100 bpm range. This was good but what was concerning me about the tachycardia (that's a heart rate over 100bpm) and the high normal pulse was that it wasn't settling into any kind of rhythm. It was dancing all over the place, one second it was 82 the next it was 110, the next it was 93. Normally when anyone takes their pulse its at a nice steady rhythm, maybe just going up or down one or two beats not 20 or 30. It literally was dancing up and down before my eyes.

    So I did what anyone wanting to avoid a trip to hospital would do, ignored the readings and changed the battery in the pulse ox. The readings didn't change so I changed the batteries again. I got the same readings. So I then used my blood pressure monitor to check my pulse. It showed again that in a space of a minute my pulse was bouncing all over the place. I decided that the best course of action was to go to bed and await hubs return from work. I convinced myself that if I sought medical help I would be told I was having a panic attack. I was too tired to put up with that kind of nonsense and after all a good nights sleep may sort everything out.

    Sunday was a repeat of Saturday, except now I had hubs and mother pleading with me to call the out of hours Dr's. Mum said "what happens if you black out?" to which I responded "I won't be able to stop you dialling 999, but until then I'm leaving it". I just made sure that I was with Hubs at all times and rested as much as possible. Again I knew really that this was an incredibly stupid thing to do but I can be very stubborn and I really didn't want to cause a fuss.

    I emailed a few people asking their advice. Their answers weren't what I wanted to hear so I chose to ignore them. I googled tachycardia and inappropriate sinus tachycardia and found that a lot of people with postural orthostatic tachycardia syndrome also suffer with IST (inappropriate sinus tachycardia). IST isn't pleasant but it isn't life threatening, although it can lead to angina and a few other nasties. I was reassured but I didn't know how much longer I could put up with a dancing heart. It was exhausting, making me nauseous and the chest pain was getting a bit more intense. I decided as all ostriches do, to bury my head in the sand, have a good nights sleep and see what happened in the morning

    I rang the on call Dr's and spoke to an extremely useless woman, after asking me if I was the patient she proceeded to ask if I was conscious! I bloody hope so I nearly replied. I know they have to read off a script and ask the relevant questions but If we have already gone through the fact that I am the patient I have given you my date of birth and my address then its pretty obvious I am conscious! The woman had real difficulty grasping what I was telling her so I dropped the word tachycardia and told her my heart was beating too quickly and that I had chest pain. Once she had finally understood and I would like to make it clear I was dealing with a foreign call centre where this kind of problem happens on a regular basis, I was informed the Dr would call me back within 20 mins.
    I gathered all my regular medication together and wrote a list of it also. That's quite a feat in itself, my regular meds fill a small carrier bag. AF told me to pack a bag, to which she received a dirty look and then she shut up. I told her I wouldn't be staying and would see her when I got back from the Dr's. With that the phone rang and It was the Devon Ambulance service. I was a bit taken back as I had thought I would get the Dr on the phone and he would tell me to meet him at the local hospital and get an ECG done.

    I gave all my details to the Ambulance service, who were lovely and very kind. They informed me they would be sending around a paramedic to assess me and that an ambulance would follow. This would be a spectacle for the neighbours! I walked down stairs very slowly and informed hubs he better get ready to shut the dogs in the kitchen as we would be having visitors, only to look outside and see that the paramedic was already on the door step!

    Much amusement followed as somewhere along the lines some one had reversed my age to 73, not 37 so the paramedic was a little surprised to see such an elderly woman in good nick. My husband assured him I had cost him a fortune in plastic surgery. The paramedic was brilliant and calmed me down. Unfortunately my pulse was bumping along at 103 and various other numbers in the hundreds. I explained what had been happening and the paramedic said "its no wonder you feel exhausted its like your body has been running a marathon for the last 3 days". He treated me so kindly and with such respect, its the first time in a long time that I have received treatment like that from a paramedic. Usually I am treated with disdain and that I am a time waster. Unfortunately over the course of the last 4 years I have had many unscheduled trips to hospital in the back of an ambulance, once with the blue lights flashing!

    After taking all my obs it was decided that a trip to the larger hospital in my area was called for. Everything bar my pulse and temperature were normal but I did need an ECG to ensure that something more sinister was not occurring. After 3 days if something sinister was happening I would have done quite a bit of damage to my heart muscle. I was pretty sure that if I was having a heart attack I would know about it, this was uncomfortable and causing extreme fatigue, but I wasn't that sick and really didn't want all this fuss.

    The ambulance crew arrived and again they were lovely.The paramedic and the ambulance paramedics all admitted they knew nothing about POTS but would be going home and googling it. They all said it was a learning experience for them as they had never encountered someone with this syndrome before. As soon as I was in the back of the ambulance I was attached to an ECG machine and a pulse ox. We took a leisurely drive in, much to the annoyance of the paramedic sat in the back with me. He took me through the ECG reading and said it was absolutely fine it was just my heart wasn't in a set rhythm and was going a bit too fast.

    When we got to the hospital I was taken through to majors, I never ever end up in minors and haven't got a clue in what that part of accident and emergency looks like. I have ended up in resus before but thankfully at the time was so ill I didn't have clue that's where they take you when there is a possibility that you might die. When AF told me afterwards I was in shock for a few days!

    It was quite amusing at the hospital as the ambulance crew wouldn't take the pulse ox off me which is very unusual- they like to keep hold of their kit. They said to me they wanted everyone to see at the point of hand over exactly what my heart rate was doing and what happened when I had to stand to move from their trolley to the hospital bed. I could have just moved over by sliding between the beds but everyone was so keen to see my heart rate rocket when I stood, I didn't think it was fair to let them down!

    My heart had dropped to around 93 when I was lying on the bed. On sitting it rose to 120, a normal persons heart will rise 10-15 bpm on changing positions and then drop back down within seconds. Mine just continued to rise, on standing it climbed to 128 bpm, dropped and then started to climb again. I told them to get the full effect I would have to be stood for longer but I was too exhausted to play along. Impressed with their new knowledge the ambulance crew spoke to every medic they could find telling all about POTS it was quite amusing to watch as the Dr's and nurses all started to google POTS at the work station! The ambulance crew stayed with me until they had a cubicle ready for me, around 5-10 minutes as it was standing room only in majors. Then both of the crew gave me a hug and told me to get better soon. It was so nice I could have cried, I have never been treated like that before.

    I was strapped up to a monitor that measured heart rate, oxygen saturation and respiration rate. As is quite normal for me when I get poorly I forget to breathe so I was regularly setting off the alarm due to it dropping to 4 or 5 inhales in a minute. I promise I don't do it on purpose my brain just forgets to keep it going, I have to make a conscious effort to breathe. I thank god for the alarm as its the only thing that makes me remember. We have never got to the bottom of why my respiratory rate falls so dramatically when I am ill. I just think of it as another autonomic nervous system dysfunction.

    The blood pressure cuff as usual has covered my arm in blood blisters, why am I so fragile? The nurse didn't believe me until she took the cuff off!

    I am so tired that I am going to have to stop here and conclude with another post tomorrow. Sorry but just to let you know I am fine just very very tired!