Exciting News

A short blog post today however I was very keen to be able to update everyone who has been following me to say that I have made it home.
After my biopsy there were no more further tests to be done and now as it is a waiting game for a few months for results I’m trialing how I get back on at home.
I spent the end of last week planning a daily timetable for me to follow and coming up with how many activities I can achieve in a day (so I don’t overdo it) with my consultant. I’m now on 5-10 minutes of activity followed with an hour break each day and ending each day at 6pm. It’s going to be tough to stick to but having experienced what happens otherwise is a good motivator. My first goals are to try and manage to start reading again and trying to get a little bit of fresh air each day.
Just before I left the hospital I had an appointment with wheelchair services and they along with my consultant and physio have decided I need a power wheelchair that can tilt and recline so Rollo and Zephryn will be getting a sibling.
It’s a bit strange being home after being in hospital for 35 days and so my Mum is staying for the first few days as I build up confidence with being on my own again and getting used to the fact that when I have seizures and don’t feel well I don’t have a support team right there anymore. I’m also waiting for my support package to be upped hopefully next week to help me manage at home a bit better. However I am so grateful to be back in my own bed and just be able to relax and feel more like me again. Also my garden has really grown since I’ve been away (pictures below). I am back just in time for potato harvesting as well!
Thank you so much to everyone who kept in touch when I was in the hospital even if I couldn’t reply. It really did mean a lot and helped me get through.



Practicing Being a Tortoise

Yesterday I had my final test- a biopsy. Unfortunately once again I proved to be immune to local anaesthetic however I managed to time the day of the procedure well as it happened to coincide with the same time a company was setting up a stall of freebies in the department and so I made it back to my ward with armfuls of free sun cream, lip balm and jewellery that changes colour of you need to put suncream on- I’m counting that as a fairly positive overall experience therefore!

Now all the tests are done the wait begins. While they are being done urgently most of the lab work is taking place in different places in the UK and will take weeks and months to come back. Meanwhile there is very little treatment I can be given. In fact it is suspected even with these results there may not be too much of a positive outcome as none of the things they are looking at exactly have good end outcomes. I am being given support with this though and am currently working with an OT to build a toolbox and learn skills to cope with all of this as well as how to deal when symptoms can’t be actively treated. I’ve also started on loading dose of vitamins which is helping a bit with energy- amazing sometimes that going back to basics is the best.

As the test results will take a while the plan now is to try and get me home. Luckily I have ended up with a brilliant consultant who has spent a lot of time with me the last few days to explain everything, answer my endless questions and start devising action plans for carers, family, paramedics and me to follow when I go home. I’ve also been working a lot with three neuro physiotherapists who’ve managed to get me up and walking again round the room with Zephryn (my rollator) so I can get a bit of independence back. I’ve had to learn a new way of walking which has been strange and feels a bit unnatural but is getting easier each time. It has been very exciting as I’ve spent the last few weeks watching other people on the ward get back to walking and it was starting to feel like I just wasn’t going to get there. Aptly four years to the day that I graduated from York I graduated from being told to only use my wheelchair with someone with me to being able to walk with Zephryn round the room independently. Not quite sure which I’m prouder of.

In some ways my worst enemy with all of this has been myself as I instantly want to be doing everything in the next hour however the consultant, and physio have made it very clear that the more I push myself the iller I will become at the moment. Consequently we’ve rewritten my point system I use at home. Each activity I do uses so many points and I have fourteen points a day. All my activities have now been given new number of higher points allocated to them than before. I think this is going to be really difficult and I’m going to have to be strict otherwise I was told today I will just bring myself back in for another long stay. My consultant today left me with the advice that the best thing I can do is remember the fable of the tortoise and the hare. So I’m going to practice being a tortoise for a while.

Meanwhile I’ve completed two loyalty cards for hospital ice smoothies and have been naming all my regular visiting pigeons to the roof on the other side of the window, if I’m here for a while longer I’ll have to start naming the seagulls. However fingers crossed home if the care can all be put back in and the procedures all written up I will be home by next week. It’s going to be strange after such a long stay but I cannot wait to be back in my own bed and leaving the allergen free hospital menu far behind me!

One Month In…

I have now been in hospital for a month which feels an incredibly weird statement to write! I can’t believe I’ve survived so long in a place that is one of my main phobias and it also feels like I’ve been here for years!

I have got moved to the more specialist neurology ward a week ago. This has been a bit of a shock to the system as I’ve spent the last few weeks in a single hospital room to be moved into a small bay with other people. In some ways this is very much a good thing as we get checked a lot more and I’ve made very good friends with a 93 year old on the ward who often thinks I’m her granddaughter and spends hours telling me about growing up in the war, how she met her husband on the train and how to make your own clothes (that’s when she isn’t playing with her bed controls and visiting the ceiling at 2am and chuckling delightedly at this until a nurse comes in to lower her bed back down or pretending to be deeply asleep when the phlebotomist appears to sit up and wink at me when she leaves to come back later). My other new ward friend sadly left today (but happily for her) and came back with non-hospital food treat supplies for us. Being in a ward though in close proximity with everyone for a while is pretty tough, especially when you don’t feel well and I cannot wait to go home just for peace, quiet and rest! Most people here are in for weeks or months so everyone is in the same boat. At weekends they try to let everyone home who could manage on passes so it becomes really laid back if your stuck in with lots of music being played everywhere, lie ins and extra cups of tea.

Since moving wards my days have been filled with adventures and attempting to be brave! I had a lumbar puncture done last week which was on the traumatic side. They decided I couldn’t have sedatives and due to another condition local anaesthetic doesn’t work on me so we just had to go for it- not fun, very painful and it took four doctors seven attempts to get any spinal fluid. However it is done. I’ve also had loads of blood tests which have been sent off to labs in Glasgow, Inverness, London and Manchester. The doctors have suspicions I may have a very rare condition that only affects around 150 people in the UK which is not good news but we don’t know that for definite yet so I’m trying not to dwell on it. Next week I will have some biopsies taken. I was supposed to have some stomach fat taken to analyse but the person who came to do the procedure decided I don’t have enough and so I’m getting away with a simpler biopsy next week from my leg instead. Other than that all my autonomic tests showed abnormalities and there are a lot of changes for the worst since I had these tests in London about 18 months ago which will explain a bit of why I feel quite so rubbish.

Other adventures have included spending two hours on the floor one night as during an episode where I couldn’t stop shaking and control my body I landed on the floor with a thump and couldn’t speak very well to get help until I was found a few hours later. The doctor came to see me at 4am and luckily nothing broken but I’m a little bit technicolour. I also can give a very good description of the underside of a hospital chair as that was all I could see. I now have to have sides on the bed if no one is with me and have a special mat that detects seizure episodes and alarms.

Meanwhile I’m getting lots of input from dieticians, physiotherapists and doctors. My consultant has visited me for the last two days and has said she suspects there will not be a cure and it will be about finding solutions to make life as manageable as possible and ways to cope with this. If I feel well enough I’ve been offered a pass to go away from the hospital for a little while this weekend to give me thinking and processing space as my Mum can stay with me. I’ve also been given some work books that I’m supposed to do with the OT on living with a life limiting illnesses to prepare- not sure what I think to this as I had a quick look through it and it seemed just like common sense but agreed to read through it and see.

I’m definitely an inpatient for the next week and a bit and the plan is to take it week by week at the moment. However I decided today I needed to just accept I’m in for now and so have my own pillow cases, my Tanzanian quilt with hidden Swahili words in it (thanks Kelli) and have my own teabag stash, so it really could be a lot worse! Also added excitement the kitchen staff visit me tomorrow to come up with my long stay menu – so no more cycling round the same 4 day allergen free menu!

So that is the latest update. Once again just to note I’m not up to replying individually to people really at the moment so this is my collective update. However thank you so much to everyone who has sent cards, letters, books, messages, texts, emails and photos- you are all brilliant and I’ve really appreciated it! I am managing very occasional visitors but only for ten minutes at a time and with warning- but if you are in the Glasgow area with a spare ten minutes feel free to come and visit.

Hospital (Again…)

Well June was safe to say a bit of a month! Things started off fantastically with visitors, two trips out the house, sunny weather and turning 26. Then my care package got approved and the council have decided that I can have 36.5 hours a week (I currently get 17). The change will make a massive difference and let me do a lot more.

Then things started too unravel. I spent two weeks in bed feeling very unwell with a POTS flair up that just would not clear. Sitting and standing was making me very unwell and nothing seemed to be working. I had doctors, paramedics, nurses all out trying to stabilise things. My GP contacted cardiology who said they weren’t able to see me or keep me on my books as I’m too complex and severe for them and need more specialist help and with their withdrawal my medication also got stopped and taken away. Fast forward some more awful days and I became very very ill and ended up in hospital (again). I did it in style as well managing to time it when all my neighbours were out in the street and having two paramedic response cars, followed by an ambulance turn up at the house with me then being carted off in a stretcher with lots of wires, drips and oxygen- I mean I have to give people something to talk about somehow!

I have now been in hospital over two weeks with no end in sight and have been getting quite a bit worse since I’ve been here especially over the last few days. I’ve met the crash team at least every other day, sometimes more than once a day and am just not picking up very well. I’ve developed seizure type episodes where I will hate ve whole body tremors, will become extremely hot, my pulse will be over 200bpm (to put into perspective my resting pulse used to be and should be about 70bpm) and my oxygen saturation dropping into the 70%s instead of the 100% it is when I’m well. I’m semi aware during these episodes but cannot speak or communicate and while initially they just used to last about 15 minutes they now can go on for hours, multiple times a day. After them as well I’m very confused and can’t move for a while. It’s been quite tough. From today I’m no longer allowed to try walking round the ward when I’m well or leave my room as they think any movement might be a trigger. My consultant also wants to have someone with me 24/7 which is a little bit difficult and feels quite full on but means that there is always someone to keep an eye on me and get help quickly. Cardiology have completely withdrawn as they’ve decided it is not a heart issue but the heart symptoms are a side effect of something else (probably something autonomic).

My mum has been staying with me when she can and has had phone calls asking her to come in in the middle of the night when they’re not sure how much more my body can take, to having to cope when the episodes have scared nurses who’ve left in the middle of it as they can’t watch it (yep did happen- though to be fair I have been told it’s really frightening to witness) and meanwhile she’s also kept all my house plants alive at home.

While nothing has worked yet I’m waiting for a bed on a specialist unit to come up to be transferred where hopefully they will have a plan. I’ve been told there may be a long wait as most patients in the unit are in for a few weeks to months and so spaces don’t come up frequently. Meanwhile I’ve had some nerve conduction tests done and some muscle testing (this was fascinating as it consisted of putting special needles in my muscles and listening to the noise the muscles generated when I moved them). There is some talk of a lumbar puncture but I’ve escaped that so far. I did have to have a slightly difficult conversation today that they don’t know how well my body will manage if it keeps having these episodes and there is a risk of my heart deciding to stop and I’m at a greater risk of strokes and brain and other organ damage.

So not too sure what will happen but decided that a blog post was the easiest way to communicate with everyone and give an update and also explain why I’m not really replying to people at the moment- life is just a little bit too full on for now however I’ve my fingers crossed for some sort of normality soon.

While it is all a bit on the difficult side there has nevertheless been lots of happy moments in amongst all the difficulties. I’m on a ward with lots of people with end stage cystic fibrosis and it’s been nice being somewhere where they are more used to young people. When I’m having a better moment I’ve been set various origami challenges by my consultant, got to practice speaking some Gaelic today with a nurse and have discovered a new addiction in the form of ice smoothies that they make here. The hospital radio came to visit and I got to put in a request for them to play Hamilton so that was exciting. Also I have one of the best views in Glasgow for seeing sunsets so it really could be worse.

An Even Longer Overdue Update

The last blog post I wrote I entitled ‘A Long Overdue Update’ and talked about not posting for a while. I seem to have outdone myself this time round as in two days time it will be a year since I last posted anything (though I have multiple draft posts sitting unpublished). I sort of lost interest in blogging for a while as I was finding the experience too exhausting and didn’t really know if there was much point in it and whether it was actually interesting for anyone to read. However as I’m struggling with keeping up with some letter writing, email replying, messaging back to people at the moment I remembered why I first began writing and thought it was about time to blog again and write another post. I’ve also learned since last blogging it doesn’t matter if a blog post is not written in one sitting either so in a round about way I’ve given myself permission to try writing again. Looking back over previous blog posts is turns out a lot can change in 363 days!

My most exciting and biggest piece of news is I have moved house! As time was going on and I was deteriorating more and more, living in my Mum’s house was proving increasingly unsuitable. I was becoming trapped within one room as I couldn’t reach the bathroom, kitchen or living room on most days and Rollo (the wheelchair) just didn’t fit in the house, not to mention odd steps dotted throughout and just large amounts of hallway to try and get through. I also couldn’t get carers. As the house was rural none of the agencies would cover that area and advertising for potential PA’s got little response. My Mum had to leave her job to look after me and again this was not a solution that would work long term- after all we all should be able to have our own lives. Fast forward several months and several scary conversations involving the dreaded words ‘care homes’ (they should never be mentioned to young people and the fact that there are young people trapped in them is horrendous, but that is a whole blog post in itself…) I decided to apply for an accessible house and said I would take one wherever it came up throughout Scotland. I knew this was a massive risk as I could end up absolutely anywhere however things were getting pretty desperate and so that’s how in March this year I came to find myself surrounded by boxes in a new flat. After an interview process a housing association decided I was their most in need person on their books and offered me what has turned out to be an amazing flat. The whole place is wheelchair accessible. The doors and hallways are wider for wheelchairs and mobility aids, the kitchen has lower level surfaces so you can cook, prepare food, use the sink etc. sitting down and the bathroom is also fully adapted. I have a small garden with ramped access and (once the landlord gets it working) an electronic door answering system. It has been incredibly exciting. I am now no longer trapped so much and can move around the house. I’ve had great fun as well choosing where furniture will go and trying to add as much colour as possible. I was extremely fortunate to be given most of my furniture from two charities who help people who have ended up in situations like me and have moved due to health issues. While I don’t know anyone in the area and in some ways this has meant more isolation, I am constantly reminded by little things here and there that moving was the right decision.

With moving house my Mum is no longer my main carer. As I have moved between councils I am in what is termed a ‘transition stage’. This involves my old council funding my care for three months while my new council does a whole new assessment and decides what to offer me. This has caused many issues with my old council which I won’t go into great detail here but basically after pressure from my MP they have agreed to fund 2.5 hours of care a day (despite acknowledging I need around 5-7 hours) and won’t fund any hours for me to have someone with me so I can leave the house. They’ve also selected that I receive council carers who mainly deal with elderly people and so have a completely different skill set for what I need at the moment. However I am trying to grit my teeth and get through it for a few months knowing that things will change for the better- I’ve just got to stick it out. At the moment I have carers turn up four times a day and as it is through the council I don’t actually know who will turn up or what time, for example in the last two days I have had eight carers, six of whom I hadn’t met before and also had two forgotten visits as I didn’t show up on the system for some reason (which for me results in missed meals and not being able to get dressed). Lunch time visits can range from 11.30-2 and then someone may turn up to make tea anywhere from 3-6 with people being put into bed between 6-10pm. I had heard about these systems and them not really working on the news and in documentaries but it is interesting being on the other side of it and experiencing how much room for improvement there is. I think a potential new dream goal would be to set up a care agency that acknowledges people have lives to lead and want some autonomy! It is also clear that the carers are used to dealing with elderly people with dementia who are on the deafer side. It tends to be assumed I don’t have capacity and I’m told what to wear, what to do and what to eat which is immensely frustrating. I do have two carers though who have been fantastic so it is not all bad. Once my new assessment is put in place by the new council I will stop using council carers and get to hire my own team of PA’s either completely independently or through an organisation. This will make a big difference as I get to be the employer and have a lot more flexibility of choosing my hours and what I need help with. I went to a meeting last night to meet some PA employers and hearing how much better it is to be your own boss in this regard and employ people that you want to work with you, as well as it being more sort of flatmate/friend helping out rather than ‘carer- cared for’ sounds so much better!

Moving has also led to a change in health teams and plans moving forward which has gone really well. Since last posting on this blog I’ve been diagnosed with a condition called Ehlers-Danlos Syndrome. It is a genetic condition which effects the bodies collagen (a good way to think of it is the glue that holds bodies together), it is the reason why I developed dysautonomia and keep having strange injuries etc. My funding for the return to London for my long term hospital stay never got approved although it is something that the NHS board are still ‘considering’. Moving to an urban area though I am nearer major hospitals and they have been keen to deal with things better. I’m finally being seen by a neurologist who wants to try and find the missing pieces of where we still don’t have health answers. I’m going to be a guinea pig for a while with lots of health tests and she has made it clear that we might never get a name for the condition we’re missing as it might be too rare but it is worth trying to find out and see how things can be made more bearable too. After my third hospital admission in a month the hospital here have trialled me on some new medication that they hope might help with my heart rate. It is too early to know yet if it will work and they want to slowly increase the dosage but I am really hopeful. I also finally got a full MRI that was requested two years ago by London but not pursued by the previous hospital which showed up a spinal tumour which I’m waiting to find out if it can be just carefully monitored at this stage or needs some treatment. Also just to add to my new health team my new GP is fantastic and put me straight back onto some medication that worked really well for me a while ago but which for funding reasons got stopped. So while on the health front things are significantly worse than a year ago for the first time it feels that people are really trying to do something and acknowledge that I cannot go on living with these symptoms without trying some more tactics- especially as they were at the stage of becoming increasingly depressing.

Later this week I will also be submitting the next stage of forms in applying for an assistance medical alert dog. My new consultants have all backed the application from a medical point of view and my landlord has given permission for one to be in the house too. I’m not sure how much of a chance I have but everyone who has been involved in the process so far think it would be a really beneficial step forwards.

Away from all things medical the last year has seen me finally start to begin managing to crochet after lots of practice attempts and I finished my first craft project. I’ve also started some occasional ‘professional reading’ for publishers which basically involves being sent advanced reading copies of books to review and therefore suits me really well especially as I can do it in times that work for me.

I’m at the very early stages of trying to set up my own charity to look at tackling isolation of people with chronic illnesses. Before getting ill I never realised that there was such a large group of people who are often completely housebound and become often forgotten about, now I speak to people often who have not been able to go outside for months, haven’t spoken to people for weeks and sometimes not seen friends for years. Having got involved with an Inclusion Scotland project looking at the experiences of people who require adult social care this has further highlighted what a major issue this is. However this is very much in the pipeline so I’ll leave details of this for another post.

Hopefully it won’t be another year before I post yet again!

A long overdue update

I started off writing this blog and it was, to be honest, a bit grumbly. I’ve not written in ages because each time I start trying to put together a post I read back through it and think it all sounds pretty negative. To be completely honest life is very tough at the moment but it’s not all negative either and I really don’t want it to come across that way. It’s seems that when life is at its toughest there are so many little moments or kind gestures and thoughts or people letting you know that they’re thinking of you that somehow it makes it all bearable. It’s also in the moments when life seems to have slowed down you almost expect it to stop that there are hundreds of things you’ve never noticed before that you’ve been too busy to spot that start to appear.

I’ve spent May pretty much living in hospital (or at least that’s how it feels). I’m currently on four trips now, all so far arranged by the GP, and we are not even half way through the month. While this is pretty rubbish and I would rather be somewhere else I made the realisation today that I have completely and utterly got over my needle phobia as I had six cannulas, injections and blood tests (attempts and successes) in the space of several hours and didn’t get stressed about it once. I also got to compete in who has the best bruise with another patient a bit later- she won but I had the most extreme telemetry reaction having lost quite a lot of skin when they changed the heart reading stickers- I’m now sporting lots of bright red circles! (There should really be hospital awards for these things). I’ve also realised that there are some pretty good people involved in my medical care whether it be one of my GP’s who even though they don’t have any appointments and aren’t in the surgery ring me when the other doctors don’t know my case so they can help, or another GP who always takes time to speak to me in Swahili and asks what I’ve been researching lately at the end of each appointment. One of my favourite nurses was working on my last visit spent in A and E and greeted me with a hug when I walked through the doors as she knew the last place I wanted to be was back in hospital. My physiotherapist also came and sat with me in A and E for a while when one of her patients didn’t turn up for their session and checked on me frequently in the ward to see I was ok. On the ward the cleaner made me a few extra cups of tea and sneaked me extra Rice Krispie cakes and a Doctor came and debated gun politics in America with me when it was quiet for a bit. So all in all while hospital is one of my least favourite places to be (realistically the worst after the dentist!) it all works out ok somehow in the end, normally by people going out there way and being kind.

In my last blog I mentioned that the hospital overseeing my case in London was planning on admitting me urgently as an inpatient for several months for further tests, to trial medication and look at seeing if I could undergo Autonomic rehabilitation. Unfortunately this has not yet happened. As the problem has been with appointments all the way along, the NHS board are not willing to agree to fund it as it’s not in Scotland. While they haven’t said no completely and keep asking for more information we have now been waiting for confirmation to go ahead for four months and are no further forward in getting an answer. While I still hope each day will bring an email telling me to go ahead with the admission my last hospital admission has also made it clear we can’t keep waiting much longer and doing nothing.

For the last few months I’ve had a steady deterioration in symptoms. I’m now able to leave the house (excluding hospital admissions) about once a month for about an hour as doing so makes me very unwell and I have to be having a very good day to attempt it. I’m having a lot more collapses and struggling to do a lot of things, so much so my Mum had to give up her job and is helping with care while we wait for a more permanent care package to be put in place. This really was not an easy decision as she enjoyed her job and I wanted to retain independence but as I kept having collapses at home doctors decided I was unsafe and this couldn’t continue. Other changes that have taken place is I now several times a day have problems with vision, and feeling my arms and legs. During these spells I can be left unable to see, or not able to walk or can drop things easily. I’m also having lots of problems eating and drinking and struggling to get enough nutrition even with prescribed liquid nutrition drinks for meals. Sometimes when I speak the sentences come out back to front and which caused great hilarity for everyone this week when trying to say, “the milk was in the fridge” I announced that the “llama was in the fridge”- no idea where that came from! While we had been reporting these things in hospital admissions as they were waiting for London no one really investigated it. However in my latest admission I saw a consultant who I hadn’t seen for ages and who noticed a huge deterioration so decided to do a more thorough examination than normal. In this she found I have now developed a heart murmur, my pupils do not respond correctly to light, my reflexes don’t always work or might not work well, I’ve got weakness on the right hand side of my body, my blood pressure is way too low and I have altered sensation in my hands and feet (if I close my eyes and someone touches one of my fingers I cannot tell you which one). While none of this is exactly good news it’s such a relief to have physical symptoms showing to a Doctor of the problems I’ve been saying I’ve been experienced so they can’t be ignored anymore.

As a result of all these changes and the continued deterioration it has been decided we can no longer just rely on getting funding for London. While it’s still hoped that this might be agreed, in the meantime I am having an urgent MRI, multiple other scans, lots of very specific blood tests and have been referred to a more local neurologist for advice. With everything declining all my latest hospital appointments in Glasgow had to be cancelled by the GP as I can’t travel for them so I’m also having to have transport arranged to get to any of these things. I’m also still awaiting genetics but the waiting list for this apparently is years!

While there is no way to view any of this as exactly positive and it’s all been horrible, pretty frightening and I’m left wondering what happened to my old life- having a slowed down life spent mainly in bed watching the world go by from my window has had its positive moments too. We have a lot of wildlife visit the garden which I’m still enough to notice throughout the day. Magnus the red squirrel, a red deer and two roe deer, five pheasants and a miscellaneous assortment of birds visit regularly which I would never have had time to notice if it wasn’t for becoming pretty much bedbound.

Autonomic Results

I’ve not really known where to begin this blog post and so I have now stopped and started and edited and erased multiple times. It has been a bit of a strange month. I think February is always a bit of a uncertain month anyway; you finally stop accidentally writing 2017 on dates but 2018 still doesn’t sound quite right, while you’re fairly certain its not a leap year, you could be wrong, and so you remain a bit uncertain how many days are left this month, one minute its snowing and the next you notice spring flowers have appeared.

As often appears in my blog, there continues to be funding issues. While the NHS covers the whole of the UK, NHS Scotland is a separate health authority to NHS England which causes problems when you have to travel out of the health authority area for appointments and treatments. There are currently no autonomic specialist units in Scotland and so I am seen by a specialised unit in London (which is the leading and pretty much the only place with NHS places in the UK for Dysautonomia). Every time I need to be seen, have an appointment, have medication approved or tests this needs to be put in a report to NHS Highlands committee who decide whether or not it is worth funding. While my previous appointments have been funded (either straight away or through appeals), my test result appointment was turned down. This seemed really ridiculous as I had had the tests (which I couldn’t get anywhere else) and all I needed to get was the results from them, yet the committee refused this. My GP consequently attempted to get my results for me instead of me having an appointment with the consultant but the consultant refused this too and was adamant I needed to be told in person in an appointment. The first appeal after this was also turned down. Currently, because of major funding cut backs it seemed a decision was being made that all out of area appointments couldn’t happen. Eventually after evidence, lots of appealing the decisions and with one hour to spare before I lost my appointment slot, the committee agreed they would fund an appointment but only if it was carried out by telephone, with me remaining in Scotland to save money. Fortunately London also agreed to this compromise, but only as a one off exception.

My phone consultation took place last Thursday and was not an appointment with good news. I think when a consultant starts with telling you that they have one piece of good news, they are basically saying there is a lot of bad news. The good news is I have not gone into complete autonomic failure (which is very good as thats a terminal diagnosis and gives you about two years maximum). However I am experiencing intermittent failure and the majority of the tests they carried out back in November were positive. My tilt table, meal test, exercise test and 24 hour blood pressure and heart rate tape all came back positive. It confirmed I have POTS (which we knew anyway) and they’ve agreed I have some sort of hyper-mobility syndrome (which ties in with Marfan’s which is what my rheumatologist suspects). My anxiety test (which included the surprise mental arithmetic test) came back negative and showed that this does not have a psychological cause. None of this news was surprising as there had been enough hints at the time that these things were going to be positive. However the consultant is extremely concerned about my continued deterioration as well as my loss of ability to do a lot of things and what appears to be occasional limb paralysis. Consequently I’m being admitted to London as an inpatient urgently. In hospital there I have to undergo all the tests I had back in November (dreading this as I know what is coming this time), so they can see if things have changed. If they have they will then need to work out why. The plan is then that I will be admitted to rehabilitation where they will try and stop the decline and see if they can reverse anything. The consultant warned me with rehabilitation things will get worse before they get better, it will be very intensive and it will be difficult both for me physically and for them from a  medical point of view. There is no guarantee it will work. After getting off the phone with the consultant she rang my G.P. and spoke to me again later in the afternoon, as did the GP. They want me to be admitted asap but as usual the problem is getting funding. My funding application went in last week and so now I have to wait and see what will happen.

Its been really hard to find information about rehabilitation for Dysautonomia in the UK. There is very little about it online or in support groups. What I have found is it is initially quite intensive (from anyway between 2 weeks- 4 months inpatient stay) with a multidisciplinary team. A huge component of it is physiotherapy and exercise which makes you feel terrible as it causes all your symptoms to flair however you have to keep on pushing it to improve your hearts stroke rate and volume. I will have to keep up the exercises daily for the rest of my life so I do not decline again, if it works.  So far I’ve found only two people who’ve undergone it, both in their cases as outpatients. For both of them it has helped a bit and they are now able to tolerate sitting up better (though still rely on wheelchairs). I’m really hopeful it will work though extremely apprehensive too. While the news has not been good it has been helpful to finally feel like I’m starting to get more answers, an action plan and not just be passed to a different department. For now though I’m just waiting for the first hurdle to be crossed; the committee to approve funding.