Thursday 30 June 2011

Just a quick hello

Morning all, (afternoon and good evening to those of you in different time zones).

Unfortunately I have woken up again with ptosis and right sided facial weakness. My stomach is complaining due to taking 30mg x 3 of mestinon yesterday. It only worked for around 2 hours at a time and was taking a good ninety minutes to be absorbed into my blood stream. So either my stomach was on a go slow as it usually works within 15-20 minutes or I needed the full whack of mestinon in my system for it to make a difference.

I feel like I am stuck between the devil and the deep blue sea today. I feel dreadful and I know I will feel better taking the mestinon.......but do I want the stomach cramps that go with it? 30mg is obviously not enough so do I take 60mg and hope for the best. This is getting like the bad old days of 2007 where for nine months I had ptosis continually. It took around 9-12 weeks for my vision to adjust to only having usable sight in one eye. The brain is an amazing thing as long as I was in a place I knew my brain would step in and create the rest of the picture for me. You know the stuff I would have seen with my right eye had I been able to open it. That's pretty cool until you realise that you can't actually see on the right hand side because you have just fallen over an obstacle that your brain wasn't aware of. I still think how the brain compensates though for loss of vision on one side is incredible.

Although I only have vision in one eye today, due to being unable to open my right eye I am feeling more confident with it today. Yesterday I felt so scared and vulnerable with my poor vision, today I am ok with it. I hate the fact I get so scared when I can't see, it really terrifies me. I lose my hearing before I faint and that doesn't bother me, but losing my vision terrifies me. I wonder why that is?

The only time I have not had problems with ptosis and double / blurred vision was when I was on 20mg of prednisolone daily. I may have had to toss in the odd mestinon but on the whole it was an awful lot better. When will they (medical profession - mainly neurologists) realise that this is either ocular, bulbar or generalised Myasthenia Gravis? What else could it be?

Ok my eyes are getting sore now as I am not blinking enough and they are drying out. So I will sign off for now. Thank you for reading.

Before I forget I believe in the USA (it may also be the case in Britain) that this is Myasthenia Gravis Awareness month. So lets raise the profile of this awful disease.

Wednesday 29 June 2011

Apologies for my absence

This is just going to be a quick update to apologise for not updating my blog, there are several genuine reasons (feel like I am at school explaining why I haven't handed in my homework! lol)

1. Had no Internet connection from late friday night until Sunday 11am BST

2. Due to humidity / heat I have had an increase in my MG like symptoms. I have had pretty much constant ptosis, double vision and blurred vision, which is not conducive to using a computer screen. Mestinon will open my eye but it doesn't get rid of the blurry vision or the double vision. Also in these symptoms very weak shaky legs. Its very much like when I first got ill in 2007.

3. Pain not being very well controlled.

Ok so those are the reasons. If there are any massively glaringly obvious mistakes that I have missed in this post its due to my vision being extremely wonky. So apologies ......again.

I have a physio appointment next week on Wednesday......or should I say torture session because its going to hurt. I am so deconditioned anything above and beyond my normal level is going to hurt. Luckily the place I am going to is the pain management clinic and physio department.So might kill two birds with one stone.

As I haven't been on any Internet sites properly for a bit I have a bit of blog reading to do so apologies for not swinging by your posts. Its highly unusual for me to be absent this long. I hope you understand.

Special message for Rachel who writes this crafters Yarn.

You may have noticed an increase on your visitors to your page. This is because Midmomga on Twitter has advertised you as a good MG blog to read. She has signposted your readers to come via me due to my blog being linked to yours......So exciting. So if anyone searches twitter for MG your blog will come up! The message reads as follows..(exactly how it was on twitter)


Thursday 23 June 2011

A difference of opinion

I read a blog earlier in the week that really annoyed and upset me.Which I actually think was the intention of the blogger, it wasn't aimed directly at me (I hope) but the wider POTS and EDS community. The blogger had chosen to post her opinion on what people with EDS and POTS should do to get well. What her post failed to understand was that  illness is not black and white, its not one size fits all and what works well for some people may not work so well for others.

What annoyed me more was the bragging on Twitter that she would get hate mail for posting this. I checked her blog this morning and it seems no one has bothered! Why would you try and reason with someone who is telling you in her post that you aren't sick and you need to change your attitude?

Her reasoning is that it is that EDS is a genetic abnormality so that means we aren't sick. Perhaps I should suggest that to parents with children with Fragile X syndrome that their kids aren't sick? Or perhaps mention to my cousin who has cystic fibrosis another genetic condition that she isn't sick either? The author of the post has very strange reasoning. Which is why her post has upset many people in both the EDS and POTS community.

If I didn't feel like death warmed up, need morphine to cope with my hip and back pain, need a wheelchair to get around outside or use a walking frame around the house, I wouldn't be stuck at home blogging I would still be working. Her post made it seem like it was a life style choice. I can assure you its not.

The basis of the post was that we should exercise to condition and strengthen our muscles. If we can't get out of bed we should exercise in bed lifting cans of beans as weights. We should push through the pain and just get on with it. It seems to me that this person is seriously ill informed about this condition. Either that or she is at the very mildest end of the spectrum and hasn't experinced dislocating her shoulder just by rolling over in bed.

Due to our crappy collagen we injure much more easily than "normal" people. Unsupervised exercise or exercise routines that have not been devised by a health professional such as a physio that has knowledge of connective tissue disorders should not be undertaken by people with EDS. Due to the fact that they can do much more damage than good.

Our village hospital physio department is not allowed to treat patients with connective tissue disorders for just this reason. All EDS patients or patients with other connective tissue disorders have to be treated at the City hospital. More damage was being done to these patients because the people treating them didn't understand the condition.

When I was walking more than 20 miles a week and doing aerobic exercise videos I still slipped discs in my back and dislocated my knees more times than I would care to mention. Exercise can make the joints stronger but it can't make up for the fact that the glue that holds my joints together doesn't work.

 I am aware of the fact that my body has become deconditioned and I need to strengthen it. However I am also aware of the fact that just rolling over in bed at the moment can send me into tachycardia (a heart rate over 100 beats per minute). My POTS consultant has labled my condition as unstable as its not responding to increased fluid and salt or with the steroid florinef. He is very unhappy at the prospect of me commencing physio with it not being controlled.

I would love the author of the post  to try that exercise line on my internet chum Minxy who has EDS. Her EDS has given her such bad gastroparesis (a paralysed stomach) that she is again looking at being hospitalised to have a feeding tube placed into her stomach as she has lost so much weight. Apparently she's not sick and just needs to lift a few cans of beans to get well. I hope you are reading this Minxy, so you know how to get better. I'd also like her to have a chat with my Dutch friend who can not transfer herself from her bed to a wheel chair without dislocating her wrists. Perhaps she should start lifting some cans of beans to improve her condition too?

I'm mad! Can you tell? Its just sheer ignorance about the condition that would allow someone to make such sweeping statements.

Why deliberately try to upset people? Why not be a little more understanding and appreciative of the differences between people? Why not try to understand that EDS is a wide ranging spectrum of a disorder?

I'm really pleased that this person has found a way to keep herself strong and healthy. I was glad to see that she was trying to publicise EDS and dysautonomia, what I didn't appreciate was the attitude towards others who are more severly afflicted with the conditions than she is.

Some people with EDS have very few symptoms other people are very badly affected. The condition is a syndrome - meaning it has a wide ranging number of symptoms that not everyone will have. Also POTS is a syndrome meaning it has a wide ranging number of symptoms. How I may feel and how others may feel with it will differ considerably. What  is agreed upon by the medical professionals is that both conditions can leave patients feeling severly fatigued. Its suggested by some that a POTS patient uses as much as five times as much energy as a "normal" person standing up. EDS patients use 3 times as much energy as a "normal" individual just moving around and keeping their bodies together.

What disappointed me most about the post was that at no point did it suggest that someone who has POTS or EDS seek the advice of a trained professional before embarking on a programme of exercise. Be that professional a Dr or a physio.

Some EDS patients who aren't affected severely by the condition have very little understanding of what its like to live at the other end of the spectrum. They say we are all doom and gloom in our blogs and there are never any success stories out there.

 I beg to differ I am a success story, I was written off by numerous Dr's as having a mental health issue. I have fought and fought hard for four years to get a name for my conditions and start getting treatment. This is just the beginning of my journey.

Wednesday 22 June 2011

Its all in the genes....

I wanted to update my blog yesterday but I was so spaced out from starting the slow release morphine that I slept most of the day! I have a hazy recollection of speaking to my GP in the afternoon, he rang to check I was OK on the morphine. All I could do was giggle and yawn, so I guess I sounded OK. Unfortunately the morphine is making me constipated...... I know too much information! So he has prescribed me some laxatives. I can't do prunes or prune juice before anybody suggests that my body will not tolerate them and I don't leave the bathroom for about 4 hours!

The morphine has worked wonders for my pain its now a 2/10 rather than being 8/10. I can cope with a small amount of pain. Today I've had my friend Amanda around  and I was actually with it! I still look pretty ill, quite pale and pasty but no pain.

So why was I desperate to post yesterday?

 It looks like its all in the genes for my sister and I. My sister and I got diagnosed the same day in two separate cities last month with Ehler-Danlos Syndrome Type 3 - Hypermobility. Yesterday my sister had her tilt table test. I made sure I gave her as much information as possible so she knew what to expect. As I chatted to her on the phone yesterday morning before her test she was very blase about it all. In fact she was confident that she didn't have POTS, it was all a bit of a fuss about nothing.

Later that afternoon I had a text message from her confirming that she did indeed have POTS. She had almost fainted after they gave her the GTN spray up her nose. The GTN spray is the same medication angina patients use to open up all their veins and arteries - its a vaso dilator. Luckily they tipped the table back down again as she slumped forward. She was tested by the same team that treats me so they knew she was my sister. They talked her through her results, her heart rate had started at 80 beats per minute supine (lying down) on the full head up tilt (simulating standing) her heart rate increased to 162 beats per minute and she began to hyperventilate.

 Its an automatic response for people with POTS to hyperventilate when standing as our body is desperately trying to get our blood to circulate around our systems. We hyperventilate to prevent fainting. I noticed it when I had my tilt table test and managed to concentrate on my breathing to slow it down. At the time I was terrified that they would accuse me of inducing a faint by hyperventilating such is my mistrust of the medical profession. However since then I have learnt its a natural POTS response.

The team testing her stepped in and got her to concentrate on her breathing and bring it back to as near normal as she could manage. They were very good with her as they had been with me, even though I tried to puke on them! They talked through her results in a lot more detail than I ever got - yes I am jealous, I'm still waiting for a copy of my report! All I know is that my heart rate went above 150 beats per minute on standing but I have no idea what my supine heart rate was.

So we have both now  been diagnosed with EDS 3 and POTS it looks like its in our genes. Its not unheard of for siblings to have both, indeed I know a local family where everyone in the family has it to varying degrees. Its just taken 37 years for my diagnosis and 35 for my sisters.

The question is now for my sister does she have ME as well? We have been told for over twenty years that she has ME. Is it really that she has had POTS and EDS all this time? I know a lot of autonomic nervous system issues also occur in ME, it is a bit of a grey area. Although how POTS and EDS patients are treated by the medical profession isn't great, (due to ignorance about the conditions) its a damn site better than the way they treat patients with ME.

This latest development has sent my parents into a frenzy to try and find out as much medical information about their families as possible. It isn't that they are looking for someone to blame or which side its come from they are purely are looking for the genetic connection.

Monday 20 June 2011

How to explain pain part two....

I know, I know, I post only twice last week and you end up with two in one morning. I just wanted to update you on how the phone call went with my GP.

There was no begging or pleading I just said I can't do this anymore and I need morphine. He just said "OK". There was no argument or trying to persuade me out of it. He was just very matter of fact and said no problem. I have been prescribed slow release morphine to be taken every 12 hours. He is starting me on a low dose as it can produce nausea. Ive never been nauseous with morphine but I appreciate his caution. He said he didn't want me being sick as a dog and then being put off by it and not taking it.

He also decided to read out a letter he had received from my old neurologist Dr X.  Dr X had obviously received a bit of a shitty letter from the rheumatologist I saw privately in May 2011. In his letter Dr X acknowledges that I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehler-Danlos Syndrome type 3. That must have killed him after saying that there was nothing wrong with me 12 months ago! He then goes on to say that I have been extensively tested for Myasthenia Gravis and there is no clinical evidence to back this diagnosis. In this respect he feels there is no point me being referred to his clinic. In lay mans terms he is refusing to see me, despite the fact I have something neurological going on. At this point both my GP and I dissolved into a fit of the giggles!

I was very calm and said "It must be very embarrassing for him to admit there is something actually wrong with me as 12 months ago it was all in my head". This was greeted with more giggles from my GP so I added "sorry that's not very fair of me to say that to you as you can't comment." At this point my GP cleared his throat and said "Yes, moving swiftly on".

Its nice to finally have a GP that believes me and is willing to learn about rare conditions. It didn't happen at the last GP practice I was at. They still believed in if you hear hoof beats its a horse not a Zebra. My GP takes the stance yep it could be  a horse but it could also be a Zebra. He doesn't hold with "That condition is too rare" as an excuse not to test for it. Just because its rare doesn't mean that no one has it, its just means very few people have it.

I'm still pissed off with my GP due to him forcing me to have a private referral to the rhuematologist. His logic at the time made no sense to me and still doesn't. I understood today that he is actually against private referrals due to his political beliefs. I explained to him that I too hold those beliefs however when it is your health you are fighting for sometimes you have to compromise your principles. I certainly would still be without a diagnosis of Ehler-Danlos Syndrome if I hadn't been prepared to compromise.

So I just need to find my previous letters from various neurologists and copy them for my GP and then he will refer me to another neurologist at the local hospital.

Is it weird that Dr X's refusal has made me laugh?

How do you explain Pain?

With my health in the way it is I am often asked to explain the level of pain I am in. Like most EDSer's I'm not a screamer or shouter when it comes to pain, I go quiet, get quite grumpy and do lots of breathing exercises. To the outside observer I may look absolutely fine, on the inside every joint in my body hurts. I can honestly say today that the only place that doesn't hurt is my feet. I look dreadful as I am doing a Casper the friendly ghost impersonation and have huge dark circles under my eyes.

Why do we EDSer's suffer in silence? Why can't we scream and shout about pain the way that other folks do? I believe its because we are so used to pain and not being believed when we tell people that we are in pain, we have lost the ability to express it. I mean whats the point in telling someone if they can't do anything about it? Or they are going to tell you its growing pains, its all in your head or you are making it up for attention.

When I try and describe what my pain feels like words escape me. I can't tell you, all I can say is I have used every drug in my arsenal and I am still hurting. I can only reduce that pain by lying very still on an electric blanket put on its highest setting. It doesn't mean that the pain has gone, it just means it is at a level where I can distract myself from it.

The one to ten pain scale means nothing to me. Everyday starts off at least a five at the moment and depending on how my body wants to play it the pain either increases, stays the same or drops down to a 2 or 3. Ten is supposed to be the worst pain you have ever experienced, most Dr's and nurses compare a 10 score with giving birth. This is silly as it automatically excludes 50% of the population who happened to be born male and will never experience this. It also excludes me and many other women who have chosen not to have children.

 I have had a ten moment in 1998 when I had bowel adhesion's and the pain was so bad I was going in and out of consciousness, do women in labour do that? I don't remember hearing of any women doing that, maybe they do. That's my ten that I use to score my pain against, so far its never been a ten again.

The pain at the moment is at the point where I really would rather not move. If I could get away with not leaving my bed to go to the bathroom it would be ideal. Any movement triggers spasms and waves of pain. My fingers currently feel like a metal bar is being drilled down inside the bone. My back feels like someone is stabbing me and punching me. Everything else hurts, throbs etc but is not in the forefront like my back and fingers.

Apparently last night I woke hubs up by moaning and groaning in my sleep. Please remember he sleeps in a separate room to me. I vaguely remember him coming in and asking me if I was OK. I can remember feeling pretty cross at being woken up and just saying pain. I dropped off back to sleep making hubs even more confused than ever. He didn't know if he should wake me and dose me up with medication or let me sleep. He decided to let me sleep as I had been so grumpy when he had asked me if I was OK. I don't blame him, I can be very grumpy and aggressive if I am woken up from sleep for no good reason. Unless the house is on fire please just let me sleep!

So today yet again I am waiting for my GP to ring. I am going to be brave and just ask for the Morphine instead of dancing around the issue. I don't care if he thinks I am a drug seeker or am a baby for not being able to cope. I can't wait for a physio appointment at the hospital or the appointment with the acupuncturist. I am in pain now and I don't want it anymore. I fully intend to only use it when absolutely necessary and to stop using it when I start the acupuncture and the physio. I don't want to be on it all the time.

So wish me luck and hope that I don't chicken out!

Friday 17 June 2011

My Week....

I feel quite naughty as I haven't posted as much as I normally do during this last week. By now on average I'm up to three posts. With all my new followers and roughly 20-30 page views per day I feel a bit guilty for not updating you on my week.

Well this last week has been a bit of a blur, mainly due to taking Amitriptyline 10mg during the day. Boy does that stuff really knock me out. Today is the first day that I haven't felt like I have consumed 3 or 4 pints of strong lager. The Amitriptyline has been prescribed for my nerve pain and it works quite well. Its not gone completely but its the only thing that's ever taken the edge off.

 On Monday my GP was so pleased with the results I am getting with using this medication he suggested adding in 10mg in the morning. Ive been in a warm fuzzy / sleepy state all week and totally out of it. To be honest I have barely been able to function. I am a member of quite a few forums and I have stupidly posted on a few of these boards. I was barely coherent talking so goodness knows what my typing has been like!

I have deliberately not done anything official or that needed high levels of concentration this week due to not being entirely on the same planet as everyone else. Thankfully the dopey/ dazed effect seems to be working its way out of my system. I have now been taking it for five days and my GP did warn me I could be completely floored by taking it during the day. I have spent most of the week in bed listening to Radio 4 Extra or the BBC World Service.

The results at night have been very good. I take 20mg of Amitriptyline about an hour before I want to settle down. Since taking it I have been sleeping a lot better and the quality of my sleep has also improved. I am still waking up during the night due to being thirsty or needing the loo, due to my excessive fluid intake but I am dropping off to sleep much more quickly when I get back into bed.

I didn't think the amitriptyline would work but I gave it a go anyway just so that I could say that I had tried it. I am really glad that I have. I think the dose may need to be gradually increased to get the full benefit. However for the first time in over ten years I have no burning sensation in my left calf which always seemed to start at night as soon as I got into bed. My left thigh also no longer continually aches. I still have a numb spot on my hip just where your knickers sit, but hey you can't have everything sorted straight away. Its going to be trial and error until we find the right pain medication to get everything under control and more manageable.

Due to my two falls on Monday I have had quite a bit of pain this week. The Amitriptyline is great for the neuropathic pain but it doesn't stop the joint and muscle pain. Presently I feel like I have been trampled on by a horse. I am keeping on top of my pain medication and on the whole its dropping it down to a more tolerable level. Some days its worse than others but at present I am coping.

Mood wise I have been a bit up and down. Its been a much better week than last week and the support I have been shown has truly touched me. On occasions its hard to concentrate on the good things in life and you find yourself focusing on the bad. I am trying to stop myself when I notice that happening. I distract myself with music, TV programmes or ringing / text messaging friends.

I don't have anymore to share with you in this post having been barely conscious this week! Hopefully I will be back on planet earth properly soon! Until then take care everyone.

Tuesday 14 June 2011

GP appointment

Its been a few days since I posted so I thought I would write a few words to let you know how I am getting on.

Yesterdays Dr's appointment went well. I am having a course of acupuncture to try and help with my back pain. I can lightly touch 4 vertebrae in my back and be in absolute agony. It has been this way for years. My new GP Dr J wasn't aware that my back was in such a state. He asked "Is it like that all the time?" To which I replied "all day, everyday". Luckily one of the Dr's at the practice is trained to administer acupuncture so I don't have to pay for it as it will be on the NHS. I hope it works although due to the Ehler Danlos Syndrome I do tend to bleed and bruise where the needles have been inserted. It always horrifies the acupuncturist as its so unusual for people to bleed or bruise as the needles are so very fine. That's EDS for you.

We discussed pain relief and the next level is morphine. Although I am in pain and I am still in pain despite paracetamol, tramadol, naproxen, amitriptyline and a iburprofen gel its currently at a level I can manage. I don't want to move to serious opiates yet. I will live for another 40 years (hopefully) and once I go down the opiates route I am running out of pain management solutions. That's a long time to be without adequate pain relief. Believe me there are some days where the pain is so bad I would sell my own grandmother to have some morphine to reduce the pain for a few hours. However that level of pain isn't constant, if it was I would have taken the morphine without so much of a backward glance.

The GP is doing referrals for Physio and Neurology. We have decided that I will not be returning to see my previous neurologist. To be honest I was dreading the thought of having to see him again. He doesn't have anything useful to add and can not think outside the box which is what is needed in my case.

As for my general health I'm not in a good way today. I had two falls yesterday which have left me hurting all over. The first fall was after the Dr's appointment, I was transferring between the wheelchair to the car and I managed to get the hem of my trousers caught on the foot rest. I ended up falling flat on my face onto the passenger seat. Thankfully no one was around to witness this, other than my husband as I would have been so embarrassed! The second fall was in the evening I got out of bed and managed to get one foot caught under the laptop cable and one foot caught under the electric blanket cable. One step forward and I toppled onto the radiator. I made such a bang hubs shouted upstairs to ask what was I doing, my response was "break dancing!". That response means he will run upstairs to check on me as that means I have fallen over.

So today my hands, fingers, shoulders, back, hips knees and Achilles tendons all hurt. I have taken my medication cocktail. I am now lying in bed trying to get comfortable.

Friday 10 June 2011

A new day.............

I find it totally amazing how my mood can shift in twenty four hours. Don't get me wrong I am still depressed, I still feel disconnected and out of it but I am no longer crying at the drop of  a hat. Yesterday I could barely speak for all the emotion, today I have managed conversation without breaking down.

I have tried to remember today what I find joy in. Sometimes its easy to forget and get so caught up in the feelings of isolation and loneliness that you can't see past them. Its easier to crawl under the duvet than face the world. After reading about Alice and her bucket list in the papers/twitter and facebook I felt a bit of an idiot, putting it very mildly. This poor child  at 15 years old is facing the fact that she is terminally ill with cancer. It makes me remember in the bleakest moments that I do have a future and I have a choice how the future unfolds.

I have to take each day at a time at the moment. Some days will be down days and  on others  I will be happier. I have to let myself know its OK to have the down days. Gradually the down days will become less and the happier days will become more. I make it sound very easy, it isn't I have been here before. I am lucky that I have caught myself before slipping completely into the black hole that is depression. I see myself at the moment as clinging onto the edge of a big abyss. I can choose to let go and fall or I can start making small cautious moves to lift myself out of it.

I've done talking therapies and CBT before but this time  at present I can't see how these can be helpful. CBT - Cognitive Behavioural Therapy is a good therapy. I have been using these techniques for over 10 years. There isn't much that any practitioner could tell me about it. Its great when there is a problem to solve such as building self esteem or confidence, getting over the break up of a relationship or helping coming to terms with a bereavement. Some of you may argue surely you are grieving for your previous way of life? I agree I am but there's no putting me back together again. I can't get back there. I need to deal with the here and now and face up to the reality of the situation.

So I have to find different ways to live the life I want within the limitations of the body which isn't co-operating. For instance today I had planned a few small jobs that I should be able to tackle......normally. Unfortunately the body wasn't going to co-operate, I felt incredibly weak ( as if lead weights had attached themselves to my limbs overnight, sneaky beggars!) Also for some unknown reason my blood pressure has decided to plummet which also makes me feel lousy. So alternative plans had to be made. Instead I did a bit of research on various subjects, did the grocery shopping on line and returned emails that I had been unable to face earlier in the week. It kept me out of trouble for a few hours.

I have to share some lighter stuff with you all after all this doom and gloom.

Firstly it is my firm belief that rum and raisin ice cream should be available on prescription! I love the stuff and with a reduced appetite sometimes its the only thing I fancy eating. I got introduced to Rum and Raisin ice cream at an early age, I have my auntie Ruby to thank for that. I can remember she made me a rum and raisin wafer. I'd never had a wafer before and I was hooked. Wafers may come and go but rum and raisin remains a constant!

I have had a female blackbird hop into my kitchen this week to take shelter from the really heavy rain. I had left the patio doors open so that the dogs could go in and out to the garden as they wished, rather than having to get up for them. I saw Mrs Blackbird in the garden checking my plant pots for slugs and snails and then suddenly the rain went crazy. Well in she popped into the kitchen and sat looking out at the rain! Thankfully all the dogs were asleep at the time otherwise they would have thought breakfast had been delivered. I watched her for a few minutes and then she flew off.

I am not too happy with Mrs Blackbird though as yesterday she helped herself to my one and only nearly ripe strawberry! I had been diligently protecting it from Mollie for a few days. Thankfully there are more on the way. I just hope we humans can get in there first!

Thanks for reading xx

Thursday 9 June 2011

100th Post

Today is my 100th post and what a journey we have been on together. There have been highs and there have been lows! However I have finally reached a landmark in blog posts and I have had very nearly 2,000 views on my blog.

Just recently I have come across lots of other EDS people on the Internet and it has been interesting hearing their stories and hearing their coping mechanisms.

Clover left me a very good comment the other day which went something like "trying to hide an illness is like trying to hold a beach ball under water." Its very true and it struck a chord with me.

 I have been holding that beach ball under water for a long time and last night it pushed its way up to the surface. Last night I had to admit to myself and my hubs that I'm not coping at present. I have a history of suffering with depression and for the last year I have been battling a very lonely fight. I couldn't admit to anyone that there was a problem as I knew that as soon as those words left my mouth no one would bother to try and find out what was wrong with me. They would use the diagnosis of depression as a catch all diagnosis pump me full of anti depressants and send me on my merry way.

The depression hasn't been truly horrific until the last few weeks. Last year I had a few downs but managed on the whole to pull myself out of them. I recognised the signs and did what I could could pull myself out of the black hole.

Unfortunately recently the bad days have been increasing, I want to throw pity parties practically every other day. You may have noticed it in my posts. I know close friends have. I should have taken action much sooner than allow myself to get into the state I am in at the moment. I have pretty much been crying on and off for the last twenty four hours.

I have spoken with my Dr this morning and as I am seeing him on Monday he wants to talk to me properly then. Quite rightly as he points out any medication could take up to two weeks before I start to feel better so a couple of days is neither here nor there. I actually feel better opening up about it and saying how I truly feel instead of pretending to every one that I am OK.

I think its been triggered by the fact I am no longer fighting day in and out for my voice to be heard and for the medical profession to accept that there is something fundamentally wrong with me. The depression no doubt is a battle scar that will heal in time.

The classic signs have been there that I should have picked up on but chose to ignore. Problems sleeping, early waking, not interested in things that I used to take pleasure in. Feelings of hopelessness, isolation and not able to communicate properly. I feel like I am looking at the world through someone else's eyes. I am disconnected from the world around me.

I am also finding it hard to accept that the bunch of medical conditions I have can be treated but not cured. The Rachel before all this happened will never come back in the same way she was. There will probably never be any dog walking on the common again - the thing I miss the most. I will never work again too unreliable health wise and what can I do lying down most of the day? I don't know why after 4 years of going through this its suddenly hit me very very hard. I am in mourning for the life I had and the version of life that I have lost. Unless you are in this position you can never get to see what its like and I hope you never do.

At the moment everything seems very bleak and I am struggling to motivate myself to do anything.

I know in my heart of hearts that it won't always be the case and considering what I have been through in the last few years its hardly surprising its taken a toll on my mental health. I am looking forward to feeling better but at the moment its an hour at a time rather than a day at a time.

I have also reached out to family and friends today who have realised along time before I did that something was amiss. Their support has been fantastic and I thank them for it. All of them know that I have battled the depression demon and overcome it, as I will again.

If you are suffering from depression, for what ever reason please don't be stupid like me and get to the point where you can't function like you used to. Reach out and tell someone how you feel, speak to your GP and let them know that you aren't coping. By doing this myself I already feel like a great weight has been lifted and its not something that I have to carry alone. Depression is not a sign of weakness......if it was Winston Churchill would never have been Prime Minister, Stephen Fry wouldn't be the charming man that he is.

Thanks for listening.

Tuesday 7 June 2011

I wish update

I just thought I would update you all after my post on Sunday. I didn't want you all worrying about me. I have also been struggling to come up with something that I felt interesting enough to post about.

So first the good news..... I won ten pounds on the lottery on Saturday night! Also this morning I opened my emails to find that I had won a ten pound Amazon voucher through a prize draw. I am part of an online survey group called "Inside the Box". They send through random surveys about television programmes you may or may not watch they take about 5 minutes to complete. Each time you complete a survey you are entered into a prize draw. The top prize is always something really good like a 3D TV and then there are a load of vouchers they give away as well. I have been completing the surveys for around a year and this is the first time I have won a voucher. I will be putting my ten pounds towards a TENS machine as over the last few days I have been borrowing a friends and had good results with it.

I would also like to take the opportunity to thank Rachel for letting me know that a baby Fox is called a Kit. Now that she has said that I remember! Apparently after looking it up today they can also be referred to as Pups and Cubs, both of which completely escaped me on Sunday night! So Thanks Rachel for putting me out of my misery! It was one of the cutest things I have ever seen.

I have also added a few new blogs to my blog lists which are very interesting and well written so if you have a moment please take a look at them.

I would also like to say hello and welcome to those of you who have found me through Twitter. In the last week I have made lots of new contacts in the POTS and EDS world and its been great learning about every ones journeys with their conditions.

I have to also extend a warm welcome to those of you who have found my blog through Facebook and the disability pages I have become involved with in the last few weeks.

Not forgetting my long term followers who have stuck with me through thick and thin. Thank you.

So how am I doing? I would put myself in the OK-ish bracket at the moment. Sunday night was hideous and I didn't sleep until gone 2am due to not being able to get comfortable due to the back and hip pain. Luckily earlier in the day a friend of ours AC had brought over his TENS machine and it was an absolute god send. I couldn't believe how well it worked. AC says I can borrow it for as long as I like, which is excellent as this back pain is going to wax and wane now.

 I learnt an important lesson on  Sunday which was  I need to be more proactive taking painkillers and not see it as some sort of weakness if I need to take medication to help me cope. No one has a go at a diabetic for taking insulin, so why all the negative attitudes surrounding painkillers? Its come to the point now where I can no longer grin and bare it. I need painkillers to be able to perform the most basic of tasks as without them I am no longer able to. I am trying to avoid things like morphine as once I get onto those I will eventually get used to them and eventually they will no longer work. I do need help at the moment dealing with breakthrough pain so I have booked a Dr's appointment for next Monday. Despite my loathing of going anywhere near the medical profession.

The pain has reduced considerably, when I say that it doesn't mean I am without pain. It means it as a level where I can still function. I can no longer remember a time when something didn't hurt. Its probably easier for me to list the body parts that don't. Most days the pain will start either by actually waking me up or a few minutes after waking. I am trying to work out what it is I am doing that is triggering off my back and to see if I can avoid it. However my back can go just sitting on the toilet and I can't avoid that one! Going upstairs can also make it pop a disc and carrying anything heavier than a cup of tea can also cause problems. So avoiding activities that make it worse is becoming an issue.

Sitting is causing me a considerable amount of pain at the moment, lying down is OK as long as I am in the recovery position with my knee propped up on a pillow. So I am suffering for my art today whilst typing this! Standing is OK but then I have to do battle with my POTS, so its not something I can do much of or for any longer than a few minutes. I can't go on like this hence my booked visit to see my GP.

So that's all my news for the moment. I hope to post again later in the week depending on how things go pain wise.

I hope everyone has a good week and I will be back soon!

Sunday 5 June 2011

I wish.....

I wish that on rapidly approaching my 100th post I had something worthwhile and inspirational to tell you all. My mood is blue, my pain has been reaching 9 out of 10 - I actually asked Amanda a trainee medic friend of mine to amputate both my legs tonight, such was the agony. She refused on the grounds it would be too messy and I would moan about having to clean the floor later. She was right on both counts.

 For the first time in years I cried with the pain and managed to freak hubs out completely.

I'm not a screamer or shouter when it comes to pain. In fact people that didn't know me would be hard pressed to notice anything was amiss. I go quiet, breathe deeply and barely move. If its really bad I will start to shake. If its worse again I will cry but its silent, no great body wracking sobs as I don't have the energy and it hurts to move.

Even when I had a small bowel obstruction over ten years ago now, I slipped in and out of consciousness without so much as a whimper. I really do the British stiff upper lip thing quite well. I think it stems from childhood my pain coping strategy. From quite a young age I knew that my peers thought I was a wimp or a moaner as everyday some bit of my body hurt and I would tell them. (my family were great). I soon learnt that if you complained a lot even if it was the truth no one believed you. How could a child with nothing medically wrong with them hurt everyday?

A classic from my youth is when a teacher rang my mum to tell her I needed picked up from primary school because I had a headache. Her words went something like this "We have maths today and Rachel now conveniently has a headache". That's stayed with me for thirty years. Yes we did have maths which I hated, I have undiagnosed discalculia (sp?) (like dyslexic but with numbers couldn't tell the time until I was 18!, but that's another story otherwise you will know me as tangent woman!).

 As I lived a ten minute walk from school it was agreed mum would set off and meet me half way rather than me hang around for her. I set off staggering down the hill vomiting most of the way. By the time mother reached me I could barely stand. I was marched straight to the Dr's where a bad sinus infection was diagnosed.I hadn't felt the pain or discomfort of a sinus infection building, I only felt it when it got to the stage of vomiting with it. I know my mother took great delight in ringing the teacher to tell her it wasn't a headache and it was absolutely nothing to do with maths. It also tells me that there is something wrong with the way my brain perceives pain. I think even at that age my brain was so accustomed to those pain messages it filtered them out until it got to a level where it could no longer ignore them.

Tonight I hid how bad it was for quite a while until I unleashed a four letter tirade on Frankie when he put his head on my lap. Hubs jumped out of his skin as I rarely shout or raise my voice when it comes to the babies. He then realised my eyes were streaming with tears. I hate the look he gives me when he is in total panic about what to do.The first thing he said was
"Took them an hour ago"
"Not working"
"What do you want to do?"
"Help me get upstairs, electric blanket and then Tens machine. If that doesn't work I need the out of hours Dr"
"OK, we have a plan"
Hubs likes plans and he also knows I hate seeing Dr's or visiting the hospital. Over the past four years my aversion to them has grown steadily worse. Its a vicious circle I admit I need them to help me, I won't see them to tell them I need help, how can they help they aren't mind readers. I know all that I just find it incredibly difficult to trust Dr's when I have seen the very worst of them.

Other than that I've had a good weekend. Mum and Dad with their new pup Maggie came and visited me Saturday. Saturday morning whilst out accompanying hubs when he took the dogs out I saw a baby fox. They probably have a special name but I can't remember it. It was about the size of a five week old weimaraner puppy, not that its much of a reference point for a lot of you. I've never seen one before so it was amazing! The beauty of nature is something to behold.

Plants in the garden are doing well and will get some photo's on here as soon as I am able.

I also want to say a big thank you to my readers/followers and a special thanks to those of you kind enough to leave comments. They have really touched my heart and quite often I go back and read them when I am having a tough time. So Thank you xx

Saturday 4 June 2011


My old friend insomnia seems to be back tonight. I thought I had managed to shake it off as it hadn't reared its ugly head in a few weeks and then bam tonight its back. Well I say tonight its technically morning. Its 2am and I have watched all the TV programmes I recorded earlier.

My Insomnia is strange I just don't feel tired there is no desire to go to sleep. I have enough pain medication in my system to sedate a bull elephant but the switch in my brain is still stuck on daytime and hasn't switched over to night mode.

Tomorrow or should I say today could go either way. I could feel really awful and have the shakes all day or I could feel tired but fine. Now its gone past 2am its not going to happen much before 6am if I do manage to finally flip the switch.

Everything is so quiet apart from hubs and the dogs all snoring away in the background. Its highly irritating as it seems to me they are showing off.  I know I should be sleeping.

Now I just need to find somethings to occupy myself with until I feel the urge to switch off.

Wednesday 1 June 2011

I've plucked up the courage to share this picture!

I took this picture of my ptosis around a month ago. I hate myself in pictures. I am not at all photogenic and since becoming ill I am no longer Kate Moss's body double ! (not that I ever was). So for all of you struggling to work out what ptosis is and what it looks like here it is....

It's not a technically brilliant photo as I had to take it myself whilst sat in the car. In this picture both eyes have ptosis just one eye is more badly effected than the other. Its not just my eyelid on the right eye that is effected as you can see the eyebrow and the right side of my face is starting to sag. To compensate and try and open my right eye you can see my left eyebrow is arched, giving me a kind of surprised look on one half of my face. However as you maybe able to see my left eyelid is also starting to droop as the lid is starting to line up half way through my pupil. Go and check out your eyelid position in the mirror and you will see the whole of your pupils not just part of it. Later that evening, well actually around 30 minutes later the left eye was completely closed leaving me blind unless I taped my eyes open. Its not comfortable to do that and although both eyes would be open my vision is completely blurred. Its like the muscles are so tired they can no longer focus to see properly.

I have ptosis everyday in my right eye to some degree. By the end of the day my eyebrow starts to droop and my eyelid starts to obscure my pupil. Some days I wake up with it, most days it just develops through the day. I have a day where its completely closed at least once a week and a couple of times a month both eyes are closed due to it.

When I have ptosis I have double vision and my depth perception is altered, so I can not see how near or far things are. It makes things like pouring a drink quite a challenge, or negotiating furniture a minor obstacle course!

There are a few things that will make the ptosis disappear like magic. One of them is taking a drug called Pyridostigmine Bromide (mestinon) which is used in the treatment of the condition Myasthenia Gravis, an ice pack applied to my eyebrow will also make the ptosis disappear for a few minutes. This only works in the disease Myasthenia Gravis, its believed it cools the neuromuscular junction. Medical studies have proven that this is the only type of ptosis it works on and this test is used in the developing world where they do not have access to western medicine.

 I will let you draw your own conclusions.

I hate being out in public when my face looks like this and tend to hide behind dark glasses. Its bad enough that when it happens I can't see properly but I have also been verbally abused by people who I can only describe as mentally and emotionally stunted. Some people including Dr's think it is perfectly acceptable to make a joke out of the way my face looks when this happens. I don't find it humorous I find it incredibly distressing and it has severely knocked my confidence.

Many of you will have no concept of how hard it has been for me to post this picture, its given me a few sleepless nights contemplating the pros and cons of exposing myself in this way. But I am in this for the long haul and the point of my blog is for people to understand and you can't understand if you only have part of the information.

Thank you