A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

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Post party blues

It was my birthday Saturday and I am still recovering from the small party we held. Add in a trip to my home town the day before which was an hours drive away and you have an exhausted Rachel, for days on end.
 
I will admit I ended up with a two day hangover due to the amount of alcohol consumed. Sunday and Monday were mainly spent sleeping and downing fluids like there was no tomorrow. I rarely drink these days, one glass of wine is often enough to leave me slurring my words, so imagine my surprise on Saturday night when I seemed to be able to drink copious amounts without it having its usual effect. I had made my favourite punch Malibu Earl of Paradise Punch recipe here. My friends say this punch is pure evil because it tastes so good but leaves you with a dreadful hangover because you don’t realise how lethal it is. It has become a firm favourite for our gatherings and due to the time of year when we hold our parties I tend to substitute the fresh raspberries with frozen ones, I just make sure they have fully defrosted.
 
The friends that visited me Saturday night will never see me in the recovery phase. I sometimes wonder if its worth it, I am now 41 and a night partying would take its toll even if I was 100% healthy. However having nothing to look forward to all year and not seeing anyone is not an option. On Saturday night our guests were already asking us if we will be holding another summer gathering like we did this year. The answer is yes because I need something to look forward to during the year. These get together’s are the only time that I see everyone and when you are chronically sick it is sometimes you that has to make all the arrangements. I don’t mind this as our parties have become something of what we jokingly call a “hot ticket”, so few people are invited that it has become very special to those who are. Hubby and I find it hard to get our heads around but it’s very flattering.
 
I hurt like hell, EDS (Ehlers Danlos Syndrome) is flaring out of control, every single joint from the base of my skull down is throbbing. My fingers have swollen, typing this is a bit of a nightmare due to hitting the wrong keys. Thank goodness for the grammar and spell checker or this wouldn’t make much sense at all. My dysautonomia symptoms are flaring up also, due to being so tired I am finding it very difficult to control my body temperature and I am feeling very breathless. My body is just letting me know that I have pushed myself to the absolute limits and to expect a roller coaster ride for the next few weeks whilst I get back on an even keel.
 
Please don’t misinterpret what I am saying I don’t feel sorry for myself, I feel angry. I am angry that this condition will not give me a break just for a little while so I can behave like a normal person for a few days without demanding pay back. I was already sore before the party began. I was downing pain medication like it was going out of fashion just so I would make it through the night. I made it through but now I am left with the consequences, hence the title of the post. Trying to be normal is a tiring business.
 
Many people don’t understand how I can say that I am so sick yet host a party or travel to my home town. What they don’t realise is that it only happens once or twice a year and it takes a month or more of preparation. For two days before my trip to visit my parents I up my fluids, salt tablets and fludrocortisone so that I am better able to cope. The day of the party I rest as much as possible and again drink lots of fluids particularly sports drinks to ensure I am fully hydrated. For the month prior to the party I have a rest schedule that I stick to religiously. Even with all these measures in place enjoying myself comes at a high price and the one thing that really annoys me is the judgement of others within the chronically sick community.
 
I always get the blues after a period of social activity, it never happens after medical appointments it just happens when I have seen friends or family. The days seem so long and empty afterwards that it makes the isolation seem much worse. Most of the time I can cope with it but always after a gathering it just seems to amplify how very alone I am. Its silly really as hubby is on holiday this week as we both knew how very ill I would be. So technically I am not alone but I am not in the social whirlwind that was last week either. Believe me I am in no fit state to be receiving guests at the moment however it doesn’t stop the longing for some social interaction. It isn’t until you are reminded of what its like to have some company when you haven’t had any for a while that it really brings home to you how isolated you are. The next few days will be hard until I begin to adjust to it again.

 

“Do you work?”

“Do you work?”

 

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

 

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be “productive” members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

 

I was recently asked this question by an old school friend that I hadn’t seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven’t seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can’t work and excuse my inability to be a normal human being. That wasn’t implied by the questioner but it is how the question made me feel.

 

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

 

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven’t worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn’t work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn’t ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

 

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

 

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don’t squeal, shout or cry on waking doesn’t mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn’t be able to function) the pain until its time for my next lot of pain killers.

 

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia – excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn’t notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

 

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

 

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don’t manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

 

If I am not up to writing then I will watch TV, due to my enforced early bedtimes – anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven’t seen evening TV for so long I couldn’t tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can’t even do that because my memory is so poor I can’t remember what happened in the previous 15 minutes and the plotline is making no sense.

 

If I manage a shower and there are many days that I don’t, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up – even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you’re not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn’t take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren’t that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

 

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn’t been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

 

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

 

Bed can never come soon enough and it’s not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

 

I realise now I haven’t even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

 

Next time when someone asks me “do you work” I am going to answer “Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!”

 

Grrrrr!

Well yesterday was rough Nurse Frankie was right about that! The fatigue from not being able to catch my breath properly meant by the time hubby got home from work at 7pm I was already dozing on the sofa.

I felt fine on waking this morning, I had had around ten hours sleep ( those hours are interrupted with toilet trips and fluid intakes, so I never actually sleep a whole night through. I can’t remember the last time I slept all night). As the morning progressed I noticed that on changing direction I was becoming dizzy as the hours have slowly ticked by the dizziness and feeling faint has progressed to the point where the only safe place for me to be is in bed. So here I am on rare disease day stuck in bed. Oh the irony!

My mood is low, I’m hormonal and steroid bitchy not a great combination! I’ve now been really sick for 18 days with a period of a week before that being mildly sicker than I normally am. So my normal routines and activities have been curtailed for 24 days. It may not seem like much but when you’ve fought so hard to get where I was 24 days ago it feel like a massive smack in the face.

This was all triggered by the Tilt Table Test on 4th February,   ( im getting confused between the TTT and a drs appointment  the TTT was a Tuesday the drs appointment was Friday 7th) its now 28th February and I’m not improving as rapidly as I would like. The last two days have been bad as for a few days prior I had made some big improvements. I’m not back to where I was before this nose dive but I was making great advances towards it. The last two days seem to be my bodies way of telling me it was too much too soon. So here I am again feeling faint, dizzy and stuck in bed. Grrr!

Its going to be a long boring day as hubby is on a late night, all my friends are working and doing normal people things. I here alone bored out of my mind. Too sick for a visit yet sick of my own company and the dogs arent great conversationalists! So I’m boring you rigid instead.

Its now a rest / nap time for me. Fingers crossed tomorrow is better xx

Feeling a bit frustrated!

I always try and make my blog posts funny / sarcastic rather than a pity party. If you’ve read my previous posts I very much hope you see that. I’ve been accused by people that I thought were sympathetic as always moaning. I don’t think I do moan unless its a particularly bad day. Unfortunately there seems to be a whole run of them at the moment.

Nurse Frankie as we’ve started calling our boy doggie knows that today is a rough day. Every time I step into my bedroom he’s making himself comfortable on my bed and looking at me sternly! As if to say ” you should be lying down”. I know I should be but after over a week in bed and getting legs like a new born deer for my troubles I don’t want to be there. Going to bed is like cutting myself off from the world. I have the internet, phone,TV and radio to keep me company but downstairs is where the real world is, not that there is a great deal going on but that’s where normal, non sick people spend their days.

So this morning has been rough I’m short of breath, mimicking a fish taken out of water. I’m hooked up to my oxygen concentrator again something I had managed to keep to afternoons. The steroids have thrown my menstrual cycle into a spin and I’m like a bitchy bear with a sore head. Patience, tolerance and the nice me have taken a holiday.

I joked with my mum this morning that waking me up should come with a warning, its like poking a bear with a stick! In the last two nights I’ve been woken from sleep on numerous occasions by people who should know better.

When I make friends I tell them don’t contact me after 730pm as I’m likely to either be asleep or on my way there. I’m quite open about the fact I have the sleep routine of a small child. Contacting me after that time means you may get utter nonsense as a reply or aggression ! Its been so bad the last two nights that I’ve switched off my phone and my tablet so that I don’t get disturbed. I get mean with sleep deprivation and that’s how I’m feeling today. Despite nearly 12 hours of sleep I’m exhausted I could cry quite easily just with the frustration of it all.

It sometimes feels like a complete lack of respect, a large smack in the face when someone you know you read the sleep riot act to still persists in texting you or messaging you on facebook after the curfew. Ok some nights I’m up until 2am or don’t sleep at all, if I’m posting on facebook past 8pm then I am indeed awake and its fine to contact me. If there’s been radio silence then I’m probably out like a light! As I said I get mean and miserable when my sleep is interrupted!

So that unfortunately is a bit of a rant rather than a blog post of any medical use to anyone! It had to be said. From tonight onwards the phone and my tablet are being switched off when I settle down to sleep. I’m not ignoring you I’m listening to my body to ensure I don’t nose dive any further. If you know me and care about me you will understand that. If you don’t well that’s up to you to decide!

I’ve been gone a while

I am sorry that again I’ve been gone a while, well actually over a year. Sometimes I couldn’t face typing out what’s been happening in my life as the act of typing it out would some how make it more real.

 Other times the blog has left me feeling exposed. On facebook on the whole I can choose who I share the information of my life with and delete and block those who are unsupportive, fake or just rude. With my blog my soul is bare to the world.

I’ve decided I need to continue with my blog and now have it set up on my tablet so I can update it whenever and where ever I like.

My story and others like mine need to be heard even if it is just by a select few, maybe no one? At least if I co tinue writing I can’t be accused of not putting the information out there.

In the last year or so my health has declined rapidly. On February 7th 2014 I had another tilt table test but this time with glucose loading and its sent my health into a nose dive. This tilt table test revealed more than Pots ( postural orthostatic tachycardia syndrome) it also revealed Orthostatic Intolerance ( my blood pressure drops on standing), an arrhythmia ( my heart never stays in a rhythm but likes to disco dance its way through the day), post prandial hypotension ( my blood pressure drops after I eat and I black out) and at the end of the of the test my consultant told me I have severe autonomic dysfunction – that was never said during the 2011 tilt.

I have been booked in for a drug trial in April this year. The drug is called ocetreocide and its the last chance saloon for me. The ocetreocide will be injected three times a day before I eat in the hope that it stops / reduces spleenic blood pooling ( too much blood being diverted to my belly after eating). It can have some nasty side effects but if tolerated by me it could make a difference. On the second day of testing  if I’ve tolerated it then I will be taught how to inject the drug myself.

I’ve tried all the usual drugs Fludrcortisone ( triggered migraines, Ivabradine dropped my blood pressure too low and midodrine stopped me being able to urinate properly and also gave me really awful stomach pains. I’m still on my salt tablets and they’ve been increased to the maximum dose after my nose dive this month. Eight of those beauties a day!

I’m also back on the fludrcortisone so far so good. Its made a small improvement as I can now get out of bed for a few hours every day. For over a week I was bed bound and hubby had to take time off to look after me. So its been a definite improvement. The side effects so far have been fat ankles, fat hands and puffy eye lids but I can put up with them if I’m not stuck in bed all day!

Last year I had a few investigations performed as my eye sight was awful continual ptosis ( right eye shut constantly) nystagmus ( rapid uncontrolled eye movements) it was a great deal of fun. I had to be seen by a neuro opthalmologist one of the rudest doctors I’ve ever met. Who treated me like all I was after was a myasthenia gravis diagnosis. To be honest I’ve gone past caring if they diagnose it or not. I’m sick of the whole MG thing and the neurology department!

I also had investigations done for my bowel adhesions as my stomach pain increased and made eating impossible as it was so painful. I ended up on liquids only and lost 2 1/2 stone in weight ( 35lbs). It was needed as I wasn’t svelte and I’ve pretty much managed to keep the weight off. Getting down to a UK size 16 for the first time in years! See every cloud and all that!

So that’s a quick summary of where I am at the moment although I forgot to add I’m also having breathing problems so I’m using my oxygen concentrator most days.

Again sorry that I abandoned this blog.

bloody hell its March already!!

Where did January and February go? Come on I want to know who has been hiding them?

Thanks for your comments on my last post – they show up in my email and I read them and then I forget to publish them …. well I have lately.

Em – unfortunately been there done that with the fludrocortisone. Horrendous migraines and did sweet fanny Adam’s to my blood pressure. I tried it from March 2011 (I think don’t quote me!) until November 2011 at varying doses by the end I couldn’t tolerate half a tablet. I tried taking it with pizotifen as well to see if that would stop the migraines and it just didn’t work. Oh well you have to give these things a go until you find the right combination / solution.

Jess – Ive been off gabapentin for two days. Bit of a long story! Isn’t it always with me! You are completely correct about gabapentin being contraindicated with MG. I took it to prove the MG connection – which as most of you know is still up for debate. Day two being off it and I feel like me again, I actually feel awake and alive instead of in a drug induced fog with absolutely no energy. I mean the kind of energy where by the end of the day you can’t even follow a TV programme. I stopped taking it because on Friday at 230am I woke up with the most horrendous stomach pain / gall bladder pain. I belched continually for 45 minutes – not something any lady should admit to but hey Ive said far worse on here so what the hell! The pain was so bad I thought I was going to have to call an ambulance. It shot through to my back and under my right shoulder. I did the next best thing and took a handful of painkillers and googled! It wasn’t dyspepsia as I’d already taken lansoprazole as I have a hiatus hernia (courtesy of EDS). Eventually around 2 hours later the morphine began to work but I felt awful. I knew there was a link with gabapentin and gall bladder / pancreatitis so decided not to take it. I am lucky that I have that option – not being epileptic. Today I am awake and feel alive, I don’t feel confused, I feel like theres some gas in the tank, for the first time since Ive taken it. I’m ringing the Dr tomorrow to tell him I won’t be taking it anymore. The side effects are just too much. The gall bladder is still a little achy and when prodded makes me squeal but I’m not unduly worried. Between me and you (the readers) I fell of the diet waggon big time last night with no ill effects!

Hubby is as far as I know being a saint on the diet front! Well if he is cheating its not showing on the scales hes now just a pound away from 2stone! I’m stuck at a 12lb loss – less said the better last night was not the only time the falling off has happened!

So I thought I would give you a quick update and let you know I’m ok. Thanks for the comments and hopefully now I am off the gabapentin I can remember to publish them!