Socialising and chronic illness

When you are chronically sick socialising can take a back seat. Either because you are too sick to visit friends or too ill to have them visit. Social networking sites can be a great way to catch up with people but it will never replace the joy that is felt when mixing with real people.

For those of you who follow my antics on my "The Myasthenia kid" page on facebook between blog posts you will be well aware that I am currently getting over some serious socialising. Last Saturday night (7th June 2014) my husband and I held a house party. Nothing too raucous, just 9 friends over for a bbq and some booze. We had planned this party for a couple of months and called it our "40 1/2 birthday party" as a bit of a laugh.

My husband managed to get the day of the party off work and basically did all the cleaning and prep work for the party to ensure that I rested as much as possible during the day so that I could enjoy myself during the evening.

The insomnia gods were not on my side last week, two nights were spent without sleep one of them being the night before the party. Due to the bad storm in the early hours of Saturday morning, even without the insomnia I wouldn't have slept as my three hounds are absolutely terrified of thunder and lightening.I did try to get some sleep once the storm had passed but it wasn't to be, I managed to go 24 hours without sleep.

How I got through the party I will never know. If it had involved leaving the house at all, I would have in all honesty cancelled. Not only had I gone without sleep but over the last week my bowel adhesions have started to kick off and on Saturday my stomach started to bloat with gastroparesis. It doesn't make for a glamourous look and by 1030pm I had changed into my yoga pants, snuggle top and a pair of slippers. I know how to rock the party look.

My guests were brilliant, they may not know or understand what is wrong with me - I display no outward signs, like many others with an invisible illness but they all pitched in getting their own drinks, tidying up their plates and rubbish and telling me off when they felt I was doing too much. Thats the kind of guest I like at my party ones who help and don't sit back expecting to be waited on hand and foot, purely because these days I just cant do that. No one said a word when I changed into my casual gear after looking so glam, all they want is for me to enjoy myself and relax in their company. Friends like that don't come into your life too often! 

What my friends won't see is the length of time it will take me to recover from the party. It could take weeks or even months such is the severity of the arse kicking my body will give me for enjoying myself. Much of yesterday was spent asleep. Today so far has been spent lying on the sofa. Luckily hubby has a late start today and hes done all the household jobs he could fit in before he left for work. I am thankful for his late start today even if it means he wont get home until after 10pm because it means I can lie in bed all day and not feel guilty for not spending time with him. The guilt I feel is enormous when I spend time away from him, in bed when he is home.

In preparation for the party I ensured Mondays blog post had been completed the week before. I naively thought I would be ok after the party (I never seem to learn) to write Thursdays post ( today's post) during the week. I feel so awful I have scrambled together this post to ensure something is published whilst I recover!

Every part of my body hurts and on Saturday night it was no different such is the consummate professionals performance. I quietly topped up my painkillers on a trip to the loo, I injected my octreotide without drama, my only concern being I was wearing a white top and if it bled ( as it sometimes does) I may have to explain the stain. The only sign that I was flagging was getting changed out of my party gear and the wedge shoes that I swear were crafted by the devil himself. Even sitting down those shoes were killing my feet! I am a fashion victim and theres not a woman in the world who hasn't endured pain to look good!

At least I have my shellac nails to remind me of what a good time I had. On the morning of the party I treated myself to a manicure and pedicure, partly because I wanted to look nice and partly as a way to stop me using up too much energy panicking that the house was tidy for the party. It did take up a lot of energy and by the time my toenails had been painted my legs were shaking with fatigue caused by holding them in the same position. Its silly things like this that remind you how sick you really are no matter how many times you try to convince yourself and the outside world that you aren't.

I love socialising and seeing friends, my body doesn't and that's the choice I make. To put up with my body wreaking its revenge on me for trying to be "normal" for once. Sometimes it feels like too higher price but I will never give up.

Frankie feeling a bit like me after the party!

A quick update : Tuesday 10th June, I have now developed cellulitis in my right hand, first finger so I am back on antibiotics. Having spoken to the dr she thinks my immune system is very low at the moment and hence why I am struggling to get rid of the cellulitis. I am back on antibiotics and now have a skin lotion that is antibacterial to apply three times a day. If I am honest I am feeling a bit sorry for myself!

EDS and Pain

As promised as part of EDS awareness month here in the UK I am dedicating each Mondays blog post to the subject of EDS. However due to being hideously poorly this is being posted on Thursday instead. 

EDS to me equals pain. Some people are really lucky (after all EDS is a syndrome with people affected to different degrees) and have very flexible joints and no pain. Others like me have a great deal of pain and others again have the added complications of gastroparesis and intestinal failure. Despite my pain I still consider myself one of the lucky ones.

I've had pain in various parts of my body for as long as I can remember. I don't recall a day in life where I wasn't experiencing pain of some description or another. As a child I assumed that everyone suffered with these types of pain and that it was normal. I limited discussions on it not wanting to appear weak, if no one else was mentioning it then there must be something wrong with me if I had to mention it. When I did mention my pain it was brushed off as growing pains or that I was just saying it to get out of something I didn't want to do.

From the age of 16 I had problems with my back, I regularly slipped discs up and down my spine. It wasn't until I got much older that things took a turn for the worse with my life long companion EDS. 

In 1999 I managed to injure my back quite badly, slipping two discs and I was in excruciating pain. I knew when I heard a very loud pop that I had done something bad. I didn't make a fuss though as I was in an exercise class and we were lying on the floor stretching out after our workout. Yes I managed to slip two discs lying down. That is how much fun EDS is! I took myself off home after class, dosed myself up on painkillers and went to bed. The following morning although I could barely stand and the pain was so intense involuntary tears ran down my face, I sucked it up and went to work. My boss was not a pleasant person and saw any illness or injury as a personal failing. At every available opportunity he / she would bitch at me calling me a hypochondriac or saying " they had never met someone with such bad health". This person never had an ounce of compassion for another human being in their life. When I rang them and informed he/she I would have to go home as I was in too much pain the phone was slammed down on me. The previous attitudes I had encountered when I mentioned I was in pain were still alive and well.

Over the next few years I had a few more slipped discs. I regularly visited a chiropractor who practised the Bowen technique. I confounded her as the manipulations never held. She told me at the end of one session that she knew that there was something wrong with me she just had no idea what it was. She had never come across it in all the years that she had been practising. 

I started to regularly pick up injuries plantar fasciitis in both feet at the same time, bursitis in both hips at the same time. All the time I carried on working with these injuries despite being in pain. My back was getting worse and worse. I could no longer stand in one spot for more than a minute without it seizing and locking up. Despite numerous visits to the doctors no investigations were done, occasionally I would be sent for physiotherapy but most of the time I was just given pain medications. The pain medications never worked they barely took the edge off. If I was using prescription medications I would be self medicating with over the counter drugs. It got to the point where I couldn't not take pain medications, such was the intensity of the pain I was enduring. I wasn't addicted to painkillers but without them life was miserable due to the pain being under medicated for years. 

I never got on top of my pain until 2011 and I finally got my diagnosis of EDS. I had to fight to get a referral and even then I had to pay to see a doctor privately. Although this doctor did diagnose the EDS she didn't appreciate the smallest amounts of movement above the limited activity I did perform daily would have me in agony. She objected to the fact I was using a wheelchair ( something I had used since 2008 as walking caused so much pain in my back, hips, knees and ankles on top of the dysautonomia I was also suffering with). Her reasoning was I needed to be more active and this would reduce the pain, what she didn't take into account was the severity of my postural orthostatic tachycardia syndrome / dysautonomia. At the end of the appointment she made me walk from her consulting room to reception. A distance I hadn't tackled for years. She walked behind my husband and I ensuring I didn't get back in my wheelchair. I should have stood up for myself and told her to ---- off but so pleased was I to have a diagnosis I was not going to let anything change her mind about what she was going to write in my official letter of diagnosis.

She proved her point with difficulty I could walk that distance however what she didn't see was the three weeks I spent in bed recovering from her "wheelchair intervention". Bursitis flared in both my hips, plantar fasciitis in both feet and my back has never been the same since. In tears I contacted my gp, who after trying me on every drug he could before starting me on morphine reluctantly had to admit defeat and write the prescription. 

We had both held off from that day for so long. Once on this road there was no turning back. There is a lot of emotion about opiates, some people seem to think that if you take opiates and aren't dying from cancer or some other dreadful disease then you are a junkie / addict. Let me assure you this is simply not the case, I do not and never have taken morphine to get high, I don't get high with it. What morphine allows me to do is get out of bed and have a bit of a life. Without morphine I would be in bed unable to move due to the severe pain in my joints. I would have zero quality of life. I do not intend to spend the rest of my life staring at four walls because of peoples ill informed attitudes towards opiates. After taking the medication I spent the first time in as long as I could remember without severe pain.

People may argue that I could have tried various different things before "giving up" and taking an opiate painkiller. I would respond with "don't you think I have tried?". Here are just a few of the things that I have tried over the years acupuncture, osteopathy, Bowen technique chiropractors, massage, Tens machines, exercise, Yoga, applying heat and using distraction techniques. You see it wasn't that I didn't try, it was that nothing worked. I still use applying heat pads / hot water bottles and distraction techniques daily to manage my pain. I will always use these first before resorting to taking more medication. Its never a case of popping more pills I use my medication sparingly. I plan to live a long life and I don't want to get 20 years down the line and be out of pain medication options.

Sometimes I get asked "what joints hurt?" its easier to reply with what joints are not hurting that day. Every joint in my body causes me pain. For the last few days every joint in my body has been burning. The pain has been so intense it's been difficult to get comfortable as even the duvet ( comforter in the USA I believe) touching my feet has hurt. Its not always this bad most days its a 5-6/10 which is a level I can deal with. At the moment my back and hips have decided they would like to be the centre of attention, next week it could be something else! Some days its a constant battle to keep on top of the pain to stop it spiralling out of control other days I don't need to touch additional pain killers however those days have been few and far between recently.

Like anyone with chronic pain there are days when the pain alters my personality. On a bad day I can become quiet and withdrawn. I can get really snappy, losing my temper at the slightest provocation. A dogs paw placed in the wrong place can leave me writhing in agony. I have a couple of these days a week and they are usually preceded by a night of poor sleep. Poor sleep is the chronic pain sufferers worst nightmare, for me it doesn't only affect my pain levels but it also exacerbates my dysautonomia. 

Over the years I have also noticed that changes in the weather can also lead to increased pain. There is a joke amongst the EDS community that we are human barometers. I have an increase in migraines and joint pain when the weather is stormy. Cold weather is the absolute worst for my joints as it makes everything feel tight and sore. If my legs get cold ( even just a draft on them) it can cause me agonising pain. They don't change colour like in Raynauds phenomenon but they do go pale and until I get them warmed up the pain can be very intense. 

EDS causes me a great deal of pain but I still try to get as much out of life as possible. One day when I was visiting my consultant I said " I wish I had known sooner that I had EDS, I could have tried to protect my joints". He replied "would you have lived life any differently?" my answer was "probably not."

Me in bed on a bad pain day!

Migraines the sneaky kind!

You may be wondering what on earth I mean when I say "Migraines the sneaky kind" up until last Wednesday, if I had read that I would have been scratching my head as well, because surely you know if you are having a migraine right? Well no not always, read on!

What I am referring to are migraines that disguise themselves as something completely different, so that they sneak up on you. Its not until its gets to the point where you are vomiting, avoiding the light (like some kind of vampire) and your usual pain medications arent working that you suddenly realise that what you are suffering from is a migraine and you've got so far into the attack that there is nothing left for you to do but ride it out.

On Tuesday 18th March 2014, I had one of these sneaky type migraines. I suffer with two kinds of migraines, classic migraines with an aura and Hemiplegic Migraines where I get no warning. With my hemiplegic migraines I wake up in the middle of the night with them.

http://www.webmd.com/migraines-headaches/what-is-a-migraine-with-aura this link explains the type of symptoms you get with a classic migraine with an aura.

http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913 this link gives a brief overview of the symptoms of a hemiplegic migraine.

I call them my sneaky migraines as when they start I don't know what they are. I am awoken from my sleep with sinus pain, severe sinus pain that goes into my front teeth. Over the course of a few hours the pain increases to the point where I feel like my head is going to explode. I self medicate with sudafed (a type of sinus decongestant), nasal sprays and rinsing my sinuses out with warm saline. Nothing stops the pain and it just keeps increasing, I start to feel sick and then the light aversion starts. This is then followed by a feeling of numbness in my face and right arm, sometimes spreading into my right leg. Then suddenly I have a lightbulb moment and realise I'm having a migraine!

 In 2009 or 2010 (sorry I can't remember the exact year) I ended up being taken into hospital for 24 hours because I was so ill with a migraine. When I was admitted I was wearing dark glasses and had my cardigan wrapped around my head to block all light out (and yes I looked ridiculous but I just didn't care!). The medics treating me were concerned I had meningitis or a bleed on the brain. All the tests came back clear, I was suffering from a migraine.

This migraine started in exactly the same way as the one on Tuesday night did. It disguised itself as a dry sinus infection. I was so convinced it was my sinuses acting up. So on Tuesday my sneaky migraine had fooled me for a second time.

I felt hideously embarrassed all those years ago that I had been hospitalised by a headache but then a migraine isn't just a bad headache, as so many people that have never had one seem to believe. A migraine is the kind of headache where you would do anything to stop the pain, even if it involved cutting off your own head.

So why didn't I recognise that it wasn't my sinuses but a migraine that was masquerading as such? Well I'm not alone in getting the two confused the link below states in one study of 100 people that believed they had sinus trouble over 90 of them had nothing wrong with their sinuses at all, they were suffering from tension headaches or migraines
http://www.webmd.com/allergies/sinus-headaches

This link breaks the study down further
http://headaches.about.com/od/diagnosis/a/ahs_sinus_mig.htm

I only discovered all this after my migraine cleared up around 13 hours after the attack had started. I was angry with myself for not recognising the fact it was a migraine and I searched the internet to find out if other people had the same sinus symptoms during their migraine attacks. I found a wealth of information about sinus pain and migraines but this only fueled my curiosity. I needed to know why the sinuses were involved, what was the mechanism behind this. I came across this site which briefly explains why the sinuses are involved
http://migraine.com/migraine-types/sinus-migraine/

As soon as I found out this information I shared it on facebook as I had previously discussed dry sinus pain with a few friends. It made so such sense. Sometimes my migraines that involve my sinuses aren't so dramatic. The pain is severe, but I'm not light sensitive. The attacks will still send me to bed and I will  vomit with them.

I could never work out how it was possible to be in so much pain with your sinuses only for it to magically disappear 12-24 hours later. During these attacks I would take decongestants and rinse my sinuses with warm water to no avail. I feel such an idiot! All this time I've had migraines with sinus involvement. If I had taken other pain medication I may have been able to reduce the attacks, rather than solider on thinking my sinuses were playing up again.

Im not new to migraines I've had them since the age of 8. Since that age they have been a mixture of classic migraines with auras and hemiplegic migraines with or without auras. By the time I was 13 years old my migraines were frequent and severe. I always vomited and I would always become paralyzed on one side of my body.

 I have a memory of my mum taking me to see my gp as she ( the gp) needed to see me during one of my migraines to confirm the diagnosis. At this age I was several inches taller than my mother and probably around a stone heavier. I remember her dragging me along the road, how the hell she did it I will never know but she did. In the doctors surgery I was diagnosed with migraine and given a prescription for pizotifen / sanomigran a drug used to prevent migraines. The doctor also gave me a soluble pain killer and made me drink it there and then. Bad idea as I decorated the treatment room with an exorcist type vomit. It was then that the doctor informed me that I was also suffering with transient gastroparesis due to the migraine. She advised me that as soon as I got my aura warning me of an impending migraine attack I must take my pain medications, if I waited the pain killers wouldn't work as for all intensive purposes my stomach would be on strike during the attack.

I am always amazed at how many Doctors and migraineurs that aren't aware that your stomach becomes paralysed during an attack. It doesn't seem to be very well known by either community, which is a dreadful shame as many sufferers could reduce the severity of their migraine if they took their pain medications as soon as the aura started. Obviously that only works if you get an aura, some people don't.

Over the years my migraine pattern has changed. As a teenager they were frequent and severe. Even though at that point I had identified a number of triggers ; emotional stress, cola, oranges / orange juice, halls menthol sweets, lockets ( a type of lozenge for colds), scampi fries to name a few. As I grew older the frequency of the migraine attacks lessened. I could now go years without them. However when I did get an attack the migraines would be in clusters so I would have 2-4 in the space of a week, knocking me sideways.

I also outgrew my triggers, I still don't cope well with menthol so avoid it, the only other trigger I have identified is emotional stress. From 2010 until 2012 I was migraine free. Unfortunately in 2012 I started on the medication fludrcortisone     (florinef) and the migraines came back in clusters. This was also a time of emotional stress which compounded the situation. When I stopped taking the fludrcortisone the migraines subsided but they were still more frequent than they had been in years.

I now manage to go several months between attacks. The last migraine I had was in November on my 40th birthday. It was a classic migraine with an aura. I've found with these type of migraines as long as I get my pain medications in quickly and can apply a hot water bottle to the back of my neck within an hour of having the aura I can limit the severity and length of the attack to just a couple of hours. On my birthday I ignored it, dosed myself up and tried to continue as if it wasn't happening. I had a couple of hours where I felt pretty ropey but I made it out to my birthday lunch and had a few glasses of champagne for medicinal purposes!

With my hemiplegic migraines there is no escaping them. They will not be ignored, I just have to ride out the storm. Its the nausea and vomiting I find hard to deal with during these attacks plus the pain is just off the chart. They leave me depleted of energy for days afterwards with several severe headaches following afterwards. Thankfully I spoke to my gp on Wednesday as the migraine was starting to subside and was prescribed three types of suppositories. Two kinds of pain killers and one anti emetic as I can not hold anything down during one of these attacks. So if you are like me during a migraine it maybe worth talking to your doctor about being prescribed suppositories rather than oral medications that will not be digested if you do manage to keep them down.

With all things medical that I discuss on my blog - I am not a doctor, what works for me may not work for you. Also if your migraines change or increase in intensity then you need to seek urgent medical advice. What you think is a migraine could be a whole host of other lot less pleasant conditions such as a brain bleed, a stroke or meningitis none of which should be ignored.

And yes Nurse Frankie was glued to my side during the episode in case any of you were wondering!

I should have said glued to my feet as he kept lying on them to ensure I didn't go anywhere!

Happy New Year ..... a little late!

Well I hope everyone had a good Christmas. Hubs and I had a quiet Christmas just us and the dogs but we really enjoyed ourselves! The morning was spent watching my Christmas presents of Peter Kay and Alan Carr's new DVDs. I laughed so hard my face hurt and I had to go and have a nap!

We don't do Christmas lunch due to my stomach still being unable most days to tolerate food before around 4pm. So after Hubs had taken the dogs out the Christmas dinner was cooked. Hubs decided to not have Turkey this year and had nut roast instead. I'm vegetarian and its a pain having to cook two Christmas Dinners. It was delicious but there was far too much of it.

On Boxing day Amanda and Ellie came over for a few hours and we had a natter and watched yet more TV! It was nice to have a little gathering although hubs was out numbered with Frankie being the only other male in the house and his conversational skills aren't up to much! On the 27th another friend popped over for a few hours, so we have been social butterflies over the festive period!

New Years Eve was good as Ellie came over and we had a curry followed by Banoffee Pie. I followed Simon Rimmers recipe and it was delicious! I don't really like Banofee pie but I enjoyed this one. I was supposed to be seeing my parents on January 2nd but unfortunately I came down with the cold that both Ellie and hubs had been suffering with before Christmas. I felt absolutely dreadful and spent most of last week in bed.

Hubs has started his diet with the aim of losing 5 stone over the next 12 months. He has a bet on with his manager. If hubs does it the boss pays for us to have a slap up meal at Tanners in Plymouth. If he doesn't do it he has to give £50 to the Bosses charity of choice. This was hubs plan last year before the car crash and then everything went to pot. We are hoping that he manages to stay on track this year.

The first week of his diet ends tomorrow and so far he has lost 9lb. We are hoping another pound falls off him by tomorrow so that its a nice 10lb for his first week. He really loses weight quite easily and never loses less that 3-4lb per week. The only problem he has is sticking on the diet even when he is doing so well. I am trying to eat more healthily too but despite sticking to soup and a few slices of bread I have stayed the same. At least I'm not eating the rubbish I was having before but I think my metabolism is screwed after not being able to eat and then eating and then it swinging between the two. I'm the heaviest I have been in years and I absolutely hate it.

I haven't been up to much this week as my blood pressure has been very low and its been leaving me completely wiped out and nauseous. My EDS is also playing up my hips are killing me and feel like its bone grinding against bone every time I move.

So that's my first post of 2012. I wish it was a little more exciting! Thanks for reading xx

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!

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.

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!

I have a diagnosis

Hi,

Again I haven't been on in a while. I haven't been doing very well and I have to balance what I do with rest periods. Unfortunately that means that I can't always post on my blog or there isn't much to tell you as I have been stuck in bed a lot of the time.

Yesterday I had to attend the local hospital for a tilt table test. Its a very basic hospital table that you are strapped to and they raise to a 60 degree angle and whilst you are standing they monitor your heart rate and blood pressure to see what its doing.

I will be honest it wasn't very pleasant around half way through I started retching, trying to be sick. My heart felt like it would beat its way out of my chest and I felt like I was going to pass out. I don't know what my base heart rate was, I tried to remain calm but I know it would have been in the 90's before starting the test.

Listening to the Dr who performed the test discussing it with his student Suzie, I heard my pulse had rocketed to 150 beats a minute, it has also hovered around 130/140 beats per minute.

When they put me back into a lying down position my heart rate dropped back to normal very quickly. It was so impressive the Dr even commented "that's one of the most dramatic things I have seen. Its POTS isn't it!" My heart soared I finally had a diagnosis for some of my symptoms. I didn't say anything as I didn't want to ruin the moment and I was still trying very hard not to vomit everywhere.

The Dr then turned to me and said "well young lady you have POTS" I replied "yes I know, Ive been trying to convince my GP about that for a year, unfortunately he doesn't believe the condition exists. Oh well its only taken 4 years to be taken seriously." I was absolutely consumed with anger - which I thought was really strange. But then I thought about it, I was angry at having to jump through all these hoops to finally prove that there is something wrong with me and its not all in my head. I was angry that despite providing my GP with medical journals and books written by people such as Blair Grubbs - The fainting phenomenon, I had still been dismissed. I had even done whats known as a poor mans tilt table test at home, where you measure your pulse on standing then at 3, 5, 7,10 Min's etc and gave this to my GP. Only to be told there is nothing wrong with me and its normal for your pulse to go up to 150 beats per minute on standing. Well it clearly isn't and the condition would explain why I feel so bloody lousy all the time.

Once I got home I felt a bit better, you could tell how angry I was as I didn't ring my mum straight away I needed to calm down. My mum, dad, sister, husband and friends have been my supporters. I also have friends I have made on the Internet through various forums and they have never met me but believed that I was ill and it wasn't in my head. Without those people cheering me on telling me I was ill and I wasn't doing it for attention I would have given up long ago.

I know that this is just another battle, I haven't won the war. I need to have the EDS/ hyper mobility recognised and diagnosed along with the gastroparesis. Many Dr's like my "wonderful" GP still don't recognise the condition. There will be other battles but after 4 years ( my being ill anniversary is 11th January 2007) of being given diagnosis's and then having them taken away or being accused of attention seeking, there is something there that I can't fake and have no control over heart rate and blood pressure!

Plus we still dont know what is causing my double vision, ptosis and nystagmus.......Occular MG?

I go back to clinic in 3-4 weeks time, so if I don't post before I will post after that.

Happy new year xxxx

Update

Hi,

sorry I haven't posted again in such a long time. 2010 has been a hellish year and to tell you the truth will be very glad to see the back of it, hoping and praying that 2011 will be considerably better and I may actually get somewhere, anywhere but here!

So whats been happening, well I seemed to have developed gastroparesis - a neurological disorder that literally means paralysed stomach. I have been waiting since September 7th to see the gastro team at the local hospital for an urgent referral. This came after I vomited blood on September 5th. Not a lot but enough to scare me particularly as it was the first time I had vomited that day.

The stomach problems are going through a good phase. I am still having a swollen abdomen which on occasion makes me look 9 months pregnant and the odd day of pain. The constant 24/7 nausea has eased I only have a few bouts a couple of days a week. But that is the nature of the beast, it comes and goes. I am still taking tramadol however I did just do three weeks without it and I haven't taken morphine for about a month.

My GP is being a complete twit though, he doesn't listen or should I say he doesn't hear. He is refusing to give me morphine, so what little supply I have left I am conserving as if I get really bad I will have to go to hospital for pain relief. As you know I hate hospitals, so if it gets bad I go to bed take what painkillers I have and wait for it to pass. My GP believes that my nausea and stomach pain are being caused by the opiates, however I developed these symptoms when I wasn't taking them. Ive had a lot of opiates, nausea is not one of the side effects I experience. I actually get aggressive and agitated when on heavy doses of morphine, ask my husband I punched him when I was in hospital on a morphine drip. His crime he kept tapping the bed with his foot, when I had just had major abdominal surgery, any movement caused extreme pain. I did ask nicely for him to stop before I launched into the physical assault!

The GP that referred me to the gastro team wasn't my usual GP and actually seemed quite switched on. Unfortunately if he stays at that practice it will be beaten out of him. Plus he never followed up on me, again another case of out of sight out of mind. He did actually suggest that I needed a muscle biopsy and had anyone ever tested me for a mitochondrial disorder. The answer is NO and it wont happen if you don't follow it up as my GP seems to think that my health problems are generated by a mental health issue. What mental health issue I don't know as hes never bothered to expand on that.

My adhesions are playing up and certain movements provoke a tugging sensation and then spasms of pain. On the whole I have had a relatively good month so I don't want this post to be seen as whinging. Because it isn't.

In November I ran the gauntlet of the CFS/ME clinic. I was actually supposed to be referred for autonomic testing - but my GP cleverly referred me to the same guy wrong clinic as he believes I have ME - with ptosis that responds to mestinon. The appointment was supposed to be 90 mins, we were kicked out after 45. I don't have ME, and that service can't help me.

The appointment was weird for the first ten minutes the guy went through my notes - surely this would have been more productive to go through these before my appointment and have some questions prepared for me? He also called me the wrong name Anita, who's Anita? Plus all my correspondence from the NHS is addressed to Ms, not Mrs. Ive been married ten years and despite changing my surname and informing them I am married they continually perpetuate this error. I know its a small thing but if they can't get the basics right what hope is there?

We talked very little about my symptoms, this guy thought he was a shrink. He wanted to know how many sexual partners I had, what my relationship was like with my parents and sibling, had I been bullied at school, what eduction I had (he was a bit taken back when I told him I had a degree). He was looking for something to pin my health problems on, fortunately for me he found nothing. I scored 3 on the depression scale (0-7 is normal) and 7 on the anxiety scale (0-7 normal). I admit I am a naturally anxious person I always have been. If I don't have something to worry about I will make something up. But I have learnt to control it and will talk myself out of it thanks to 2 years of CBT over 10 years ago.

He agreed that my autonomic nervous system needed testing and I will be having a tilt table test in the next few months. I have now started coming off medications that I know stabilise my autonomic nervous system - like the pill. He didn't tell me to but I am educated enough to know through my own research that this will screw up the results. Progesterone is used as a first line treatment for blood pressure issues as is Mestinon and Sudafed.

I had a letter from the Dr yesterday detailing his findings from our 45 min appointment. Again it contained a series of errors, despite the fact that I had given him a typed medical history and a copy of a letter I had sent my GP outlining all my symptoms. I find it hard to understand if you have all the information in front of you how you can still get things wrong! On top of that despite him meeting my husband and stating in his letter I was in a supportive marriage it was addressed to Ms!!! WTF

In the letter he does have a bit of a veiled go at my GP for not helping more and treating my symptoms. He does agree I need autonomic nervous system testing which he will do - I now need to be referred again to the correct clinic.......I have only been waiting since May 2010. Sorry if I appear sarcastic! He also tells him that Mestinon does indeed help control low BP - my GP says my low BP is being caused by the mestinon.

However the letter wasn't without its pitfalls, he doesn't openly suggest I have a psychiatric evaluation but he states he finds it odd that the question of somatization hasn't been addressed. Yep that old medical diagnostic standby when they can't figure it out somatization! Its the patients fault they are sick, not their fault as they can't think outside the box! He also states that I should stop having tests performed on me and he should concentrate more on treating my symptoms and improving my functional capabilities. I agree they should be working out a treatment plan, but stopping tests??? How are they going to find out what is wrong with me if they don't even try?

So I am left yet again with good news and bad, unfortunately this is my life they are playing around with.

I am at present starting the process of changing GP's, I am hoping to move to another practice where the Dr's there are actually up for a challenge and don't just take their pay checks for doing sod all. I really don't know how my GP sleeps at night as if he treats me like this what does he do to his other chronically sick patients?

The GP practice I hope to move to have patients with autonomic nervous system problems - my current GP says POTS doesn't exist and you can't have autonomic nervous system problems unless you have MS or Parkinsons.

I have also provided him with the beighton scale, a score of over 5 means you are hypermobile a condition that runs with autonomic nervous system problems. I marked on each test what I could and couldn't do - its things like can you get your thumb to touch your wrist, can you put your little finger into a position of more than 90 degrees when your hand lies flat, those two I can do and is a score immediately of 4, I can also do several others. The condition causes unstable joints, joint pain and can affect the vascular system causing pooling. So my blood pools in my legs and feet when I sit with my feet on the floor (not raised) or when I stand. So when I shower my legs go purple, I get pains in my chest and the lack of blood flowing to my head causes me to pass out. Which I am doing.

But apparently according to my current GP this doesn't exist and I spend far too much time on the Internet collecting medical conditions. I would like to point out if my GP was actually providing me answers I wouldn't have to go onto the Internet and do hours of research - reading actual medical papers published on sites such as the lancet, PubMed. Its not sites that have no medical professional input.

So that's me Ive given you a potted update on whats happened over the last few months.

If I don't post again this year let me wish you all a very merry Christmas and a happy new year!

Love
The MG KID

Been away for far too long

Hi,
and guess what ? Many apologies to those of you who have been following my blog. I have been quite unwell - will get into that later and have been battling depression a bit over the summer. It got so bad that I didn't want to go onto the computer and email friends etc. So I apologise. I think that I just had enough after my trip to hospital in March and still getting no where.

Ok so whats happened since May when I did last my last entry? Well I had a load of blood tests done for all sorts of things like Lyme disease and Addisons. Addisons one came back as a low base cortisol level in the 300, but when I was given the stuff to stimulate the adrenal gland it went nuts. Having read about it I was given the old test which is enough chemical to stimulate pretty much dead adrenal glands! However this was ignored by my GP when I brought this up. I did score a low b12 serum level. I had 178, the cut off in the UK was 180, so it was a bit of a battle being treated. The only reason I was able to be treated was that I have numb hands and feet a sign of B12 deficiency. Within 5 days of taking the b12 replacement my feet were no longer numb and my head felt clearer than it had in months. I still get the odd day of hand numbness but that could be my old friend carpel tunnel playing up.

In June I was admitted to hospital for a week. I had really bad stomach pains, vomiting and my abdomen had swollen so I looked 9 months pregnant. After a variety of tests this was put down to adhesions / scar tissue from previous surgeries. I have been in pain ever since and have been taking morphine pretty regularly since then. I also started vomiting undigested food and swelling all the time. I saw a surgeon in August who believed it was gastroparesis and he thought as this is a neuromuscular disease that the stomach problems and all my other problems were related. Its funny everybody outside the speciality of neurology tells me I have a neuromuscular disease! Probably MG. Its a shame they aren't my drs I may actually get treatment if they were.

I am currently waiting on a referral to the gastroenterology team for tests, but I have been warned that this will be months rather than weeks. My symptoms are nausea, vomiting, dry heaving, no appetite, stomach pain and weight loss. I have lost 57lb in around 18 months. Somedays I can eat other days I struggle to even drink a cup of tea as what ever I swallow just sticks in the back of my throat. Thats when I know I will projectile vomit. Its got more serious lately as I vomited blood- that was the first time I had vomited all day- so it wasn't due to breaking capilaries at the back of my throat.

I would like to take this opportunity to say hello to Danka who left me a comment back in May. I hope that you find this and that my absence from the blog has meant you have stopped checking for new posts. I had no idea about your comment, my mum actually told me as she was reading my blog to see if I had made any new entries. I was very sorry to hear about your daughter and it also makes me angry as there are far too many of us out there suffering like this only to be told our symptoms are functional. Functional for you guys who aren't familiar with neurology talk is basically telling the patient its all in there heads or conversion disorder. It isn't surprising as neurologists seem to believe that 60% of their outpatient list suffers with functional symptoms and is wasting their precious time! I wonder what other profession would get away with saying that 60% of the time they dont know whats wrong? Its not a great track record is it? You wouldn't take your car to a garage where they only fixed it 40% of the time would you?

Danka, I am going to reply to your comments on the comment page! I hope you see this post.