London Calling

Last week I wrote that my week of tests had now been funded. Really strangely while my week of testing has been funded my appointment to get my results and plan next steps hasn’t been! So I’m facing having to go through the whole funding process again so I can find out my results and what I can do to improve. This seems really ridiculous and sums up bureaucracy at its finest. However I’m trying not to think about that too much for now and will worry about it when it gets to the stage of meetings.

However more positively I have had my inpatient stay confirmed now and I will be admitted in early November. I am absolutely terrified and also excited, which is a strange mix. I know the week is going to make me feel terrible as the whole purpose behind it is to trigger symptoms so that they can be recorded and measured. I’ve kind of signed up to feel especially rubbish for a while. However I’m really excited at the prospect of finally getting answers and knowing what is going on. Hopefully with that information I will be able to learn more about what I’m dealing with and there maybe be more treatment to make life manageable.

With my appointment letter came a further letter with a list of tests and instructions on how to prepare for them as well as length of time each one will take. Some last 24 hours such as a wearing a blood pressure cuff which will take readings every twenty minutes another one involves cycling and says it takes an hour and a half (now I know cycling for an hour and a half will be impossible for me!). Other tests require me to keep my hands warm before, the majority involve fasting for four hours prior and slightly horribly the majority also need cannulas- I’m hoping they’ll have more luck there then they do here at finding my veins! I’m being tested for many autonomic related things from breathing to heart rate to exercise tolerance to why I can’t manage to eat meals without feeling ill. Some of my blood samples will also be sent off round the UK to different specialised labs for testing (my blood is becoming better travelled than me!) It’s very odd to be going somewhere were they understand my symptoms and have finally found potential connections between them all.

I’ve booked sleeper train tickets which I’m pretty excited about. I’m hoping this will make the journey seem a lot better than the last one and it will be something else to tick off that I have done. I can’t really imagine what it will be like so shall have to wait to see.

I just can’t quite believe after these months of waiting I just have a few weeks to go until it is here!


Some good news

This is a very brief update but I’ve had some very good news so wanted to write a post to let people know. I found out yesterday that the appeal for funding to be seen by the autonomic unit for my week of tests was successful. I am incredibly relieved.

I ended up in hospital this weekend for more IV fluids as I’ve had a terrible orthostatic headache the last few days and haven’t been able to sit or stand up without becoming very unwell and the doctor wanted to see if fluids would help. They did slightly and so I’m now back home to my own bed but to return if it increases again. Luckily my own GP was on call last night and so gave me the good news which of course improved the whole hospital experience.

I heard from the Autonomic Unit this morning as well and as soon as the paperwork is through they will give me my inpatient dates. They think it will likely be in November but potentially they might be able to give me an October admission. As my last trip to London I wasn’t so ill and struggled with the journey down anyway we are going to see if we can get the sleeper train so I can lie down on the way there and back. I’ve never been on a sleeper train before so this will be a new experience for me.

In other good news this week my physio therapist has given me some supports for my knees and ankles to keep my joints in place. It’s helping and my pain levels are a bit more manageable.

After what has been a tough last few weeks I’m feeling a lot more cheerful again and so glad that things are going a bit more to plan once more!

Highs, lows and quite a lot of waiting…

I haven’t really known where to begin this blog post and so I’ve put off writing for a while. The last few weeks have had some very good moments and some very tough ones and so it has been a bit of a rollercoaster. In fact thinking about it I can’t quite believe how much has been squeezed into the last few weeks.

To begin with the good though. Since finishing my dissertation I’ve been able to get out and about more. This has helped enormously as it’s not until your stuck in that you realise how much fresh air does! With some help from my physio and lots of practice I’ve got better at self propelling my wheelchair and can now go round the whole of a supermarket without help and just get very tired towards the end.

Being able to get out more has meant that I’ve been able to go up and down the road leading to my house in the evening when my Mum gets home from work. I’m able to do this about twice a week in my wheelchair. Consequently, I’ve been able to deer spot, cow spot and also spend more time with the dogs.

I’ve been out and about in town a little bit more and we are getting good at finding flat and accessible walks. Not all have quite been on a beaten track though and Rollo and I have been off roading which resulted in having to be rescued from a gigantic very deep and very muddy puddle!

I had a relative come to stay and it was really good getting to have someone else to chat to, get out and about and it was a lovely few days that went incredibly quickly. I felt like I was on holiday and it was the perfect way to end several months of studying. The stay ended with chips on the beach, it doesn’t get much better than that!

Slightly less good news in the last few weeks have been, unsurprisingly, medical related. The funding application that my GPs put together for me to have my week of assessments in London got approved locally and at regional level but has been rejected at national level. This is very upsetting news and has also meant I am very stuck at the moment. Cardiology and rheumatology have refused to see me in Glasgow until I have my tests done by London because they think that my case is too specialised and not straightforward enough so need more advice. Not being able to be seen by London I’m not being seen by anyone above primary doctor level just now. My GPs have submitted an appeal so it’s now a case of waiting for that and seeing what happens. Obviously this is far from the news I wanted and I really don’t know what will happen next.

The last few weeks I’ve also continued to deteriorate and need more help with day to day living. I had another OT assessment to review the changes that have taken place. I’m now no longer considered safe enough for any meal preparation, to shower without assistance and need more help with tasks such as getting dressed. She is not happy with the number of falls I’ve had either and so I now have grab rails everywhere round the house to hold onto if I think I might fall. To compensate for this change of events I’ve added a bit more interesting decoration to the house too… in the theme of course of Christmas…

I’ve also had a lot more pain and with some investigation it’s been discovered this is in part because my joints aren’t holding in place like they should and I can’t do this myself. As a result I’m waiting for an assessment to see if I need to wear some form of brace. Meanwhile I have some cushions positioned to keep my feet in place when I’m sitting to try and ease the pain a bit. I’ve also been encouraged to increase the amount of oramorph I take but I hate doing this.

As I’m needing more support I’m also now awaiting an assessment to get home care. Unfortunately, as hit the press this week, there is a massive deficit in home care in my local area and currently thousands of hours that people need help for have gone unmet so far this year. I’ve been told I might have a very long wait just to be assessed. This is causing many problems as my Mum has been told by my doctors and the OT that she should consider if she can work with the help that I need. Luckily as she works on the community as a nurse her hours are flexible-ish. However when she was called away as an emergency for a non-work related matter this week for several days she wasn’t able to go. We tried to get me emergency home care but nothing was available and the local nurses couldn’t provide the support that I might need either. I’m also not eligible for respite care locally as I’m under 60. I feel I can’t be the only young disabled person in the area but it feels like it just now. It’s horrible being stuck in this situation as I want to be able to do things for myself and don’t really want to have to accept help but currently have no choice. Unfortunately even in accepting help this causes huge problems for other people. Safe to say I feel very stuck. However hopefully time will improve things and I will get to the top of the lists for assessments at some point!

A silver lining in this though is once I have home care agreed upon, while on one hand it does confirm reliance on another person on the other hand it is one step closer to getting to live by myself again as it starts to look at support I might have in place.

To finish though with a few more positives. As I’ve been trying to stay away from the land of boredom I have set myself a number of goals. I’m going to try and finish reading the BBCs top 200 books, read a book from every country and I’m trying to get back into learning Gaelic. I also really want to find some volunteering I can do from home for a couple of hours a week. So if everyone knows of anything please let me know.

I have now scheduled to blog more regularly and will aim for more positive posts too! (For those who follow my blog via social media I don’t tend to put a link up except about once a month which is why there may be gaps in reading).

General September Update

As I type this there is torrential rain outside and I feel quite glad that I am tucked up in bed buried beneath multiple duvets and blankets with a cup of very hot tea beside me. It feels like Autumn has well and truly arrived. I am currently joined by two dogs who are showing no interest in the outside world today, they are fair weather creatures!

While I did post a blog at the end of last week to mention that my dissertation had been completed and my MA over, I thought it would be best to have a general update post as many people have been asking me what has been happening and what the latest news is, so here it all is…

I continue to be admitted to hospital extremely regularly, so much so at the two week mark of not stepping foot within the doors I have a mini celebration. As I am a regular I am getting to know the nurses and some of the consultants and they are getting to know me which makes life easier when I am there. They also know I hate being there and so they try to get me in and out again as quickly as possible. I don’t go as often as I should and my visits are normally after being strongly encouraged to attend by my G.P. or when I get to a stage where I really can’t cope. Unfortunately due to being a regular and having to have IV fluids every time I go in (this is the primary purpose in going) my veins no longer like to cooperate. I have scar tissue developing now on them, which makes it more difficult to get needles to go through. My last hospital visit took three different people and many different attempts until they found one vein that worked temporarily. This is not much fun and while I had got over my needle phobia this doesn’t help that fear lie dormant. However, there has been some talk about getting a port (a thing that is inserted in an operation to give permanent vein access) and this scares me more, it also throws up the added risks of infections and things. So right now I am happy to make do with temperamental veins! When I am in hospital it is normally due to me becoming hypovolemic (too little blood volume) and so they just top me up and I am free to go until next time.

I also mentioned in previous posts that I have been having problems with my eye sight disappearing and becoming blurry during flair ups. This has increased and often several times a week now I have problems with my sight. As this, like the hospital visits, have become more frequent it is a little bit less scary now. It is amazing what you can get used to! I had an optician visit just to see if there was anything obvious causing this. Fortunately there is nothing structurally wrong with my eyes and so the doctor and optician think this suggests that there is a neurological cause, probably caused by a mixing up of messages from my brain. Having a bit more free time I have done some researching through medical journals and discovered that eye sight problems such as these are not uncommon with dysautonomia patients. While there is not much research into the area it looks like it is either caused by mini TIA’s when the blood and oxygen is struggling to reach your brain (ties in with my hypovolemia and fast pulse rate) or it is caused by the two nervous systems competing with each other causing parts of the body to shut down.

My medical journal investigations have also brought up some more interesting information about a condition called Mast Cell Activation Syndrome that often occurs with POTS and connective tissue disorders and for which I match the symptoms for incredibly well. The condition has only been recognised in the UK since 2011 so very little is known. However, my amazing GP who luckily doesn’t mind me doing me own research and appearing at my next appointment with all my findings thinks this is a potential too and so is going away to find out what she can about it. While I know it is generally not suggested to google your symptoms to find out what you come up with, I have found using my university library access to access journals has been quite helpful. Everything I’m being diagnosed with has only recently been discovered so papers are limited and often don’t have very many participants in the studies however sometimes it is reassuring to know you are not alone!

I continue to have Physio therapy every three weeks. This consists of being given exercises which I do multiple times a day at home. This has been going very well and I have now managed to build enough arm strength that I am able to self propel my wheelchair for slightly longer distances. The success of my leg exercises depends on the day, however what I am finding easy and difficult has given more clues to the types of conditions that I might have so even that has some positives included.

I have just started undergoing the process of applying for Personal Independence Payment or PIP as its more commonly called. This is a benefit that is given to people who have problems with mobility and everyday living tasks. You are awarded either a basic or advanced rate if you are classed as eligible. The process to apply is very long. So far I have sent off for forms and filled one lot of forms in. Next I have another lot of forms to fill in that is to be submitted with medical evidence as to my limitations and from there I am invited to an assessment in person. I’ve heard many horror stories online and in the media of people’s PIP applications so I am quite apprehensive about this, however really need to be able to find a way to get more help as I am struggling more and more. For my PIP application I have been keeping a diary of what I struggle with or need help with on a daily basis and have been quite shocked seeing it written down just how much support I now get. Obviously, I cannot stay living with my Mum forever and I’m needing more help in the day so we are going to start looking at ways I can live independently but still get the support I need.

I am still waiting for funding to be approved to return to the autonomic unit for my week of tests in London. The GP however now thinks this is just a case of waiting formalities. I am also still waiting for my cardiology and rheumatology appointments as there was a bit of a mix up over which departments should see me first however that is now being sorted.

Away from the medical side of things I am beginning to get used to life on wheels! Rollo and I have been increasing our adventures and I feel less self conscious now when I am out and about. I continue to be surprised how inaccessible places are, however have managed some off road wheeling to compensate! But I shall save that for another post…

A Battle Completed

I haven’t posted in quite a while as life, as it has a habit of doing, got in the way a bit. I haven’t been especially busy but I have had to ration all the energy I have had into my dissertation. It has been a slow and very painful process, as I have only been averaging a few hours on it a day and have forgone everything I can to reach the end goal. Consequently I have an overflowing email inbox, my room is very messy, I haven’t spoken to anyone for quite a while and have been a hermit in my bedroom staring at laptop screens for what feels like months. However, my dissertation is now completed which means I have made it to the end of my masters degree and now just have to sit and await results in about two months time. I’ve no idea what to expect to walk away with, as my goals have had to change from wanting to get a distinction to simply a pass being enough. However, at this point what ever I achieve I shall be incredibly happy and proud that I stuck this out to the end. I think after the pain, tears, at times feeling of sheer impossibility and doubts as to why I’m studying, finishing my dissertation has become enough of an award in itself.

When I started my degree last September I was well. Although I did have some troublesome symptoms I was able to do what ever I wanted, rarely missed classes and was very active. Health rarely got in the way. Handing my dissertation in today has been a reflection not only on a year of academic work but also a year of rapidly deteriorating health. The first term of my degree went really well. I got grades I wanted, was student rep for my course and got to sit on several committees. I had problems finding time to fit everything in but I was very happy. Then, the first week back in term two, I had my first collapse at home and the first of my visits to A and E via ambulance, then really began this journey into the land of chronic illnesses. Since then I have just continued to deteriorate. I started this degree being able to go on hikes, now I can make about 50 metres and have to use a wheelchair. I used to struggle to find time to do everything I wanted to do, now I have the time but struggle to find the energy. It is strange to look at what has changed and how. Before my life consisted of reading multiple journal articles a day, now it is filled with taking vital signs multiple times a day. I visit the doctors more than I see the inside of a library and have seen the inside of an ambulance this last term more than I have seen the inside of the bus to university.

While it sounds a bit depressing, right now I don’t feel too down about it. I’m just incredibly pleased that when I was told to give up my degree back at the start of this year that I said no and persevered. That when I was told I wouldn’t be able to complete it and that I should at least take a leave of absence that I have stuck on. Back then we thought I would simply get better, it would be a case of working out what was wrong, giving me a tablet and all would be well. Now it is apparent that that is no longer the case. It is looking likely that I have something genetic and potentially the end scenario is not good. If that is the case, I am even more grateful now that I got to the end and have something else to tick off that I wanted to achieve.

Since starting studying for my dissertation I have had fourteen unexpected hospital admissions, been seen by seven different hospital departments, been to six different hospitals, however despite this I have managed to get my dissertation finished.

I know if it hadn’t been for the obstacles in the way of studying, I would not have the sense of success I have now in getting to the end. I can’t quite believe I’ve done it and that when I wake up tomorrow I don’t have worry about word counts and deadlines! Instead I can aim for the next challenges that life has thrown my way; getting full diagnoses and looking at my options for independent living.

It Never Rains but it Pours

The title of this post can be taken both literally due to the never ending torrents of rain this week has seen and figuratively as I have had a week that has been far from good health wise.

I am officially ‘deteriorating’ only I don’t think anyone yet fully knows what that means. It just seems to be a nice medical jargon term to highlight that everything keeps going down hill fast and we’re not doing very well at stopping it or slowing it down.

Since my last hospital admission just over a week ago I’ve really not been able to pick up well at all. We’re not sure if I left hospital too prematurely (I was offered another 24 hours but didn’t see the point of staying as I felt I could carry on the medication etc just as well at home). However since coming home I’ve been in bed a little bit more than normal, which was a lot and am not managing to do much at all. It’s been tough.

The middle of last week after several days of feeling terrible I ended up in an emergency GP appointment. I was again offered to be admitted to hospital but decided to see how I got on at home with another new medication and complete bed rest. While the medication did help a bit and had the added side effect of sedation so I slept pretty much constantly, I really wasn’t managing to improve.

The weekend followed with fevers of 39 degrees, lots of pain, nausea and feeling really odd. Nothing really seemed to work. I keep losing my vision in my right eye too. All my simple bloods are fine and so it keeps pointing that this is something neurological and definitely more than just POTS (which is complicated enough in itself!)

This all accumulated Monday morning when I began to feel like I wasn’t real at all and had a sustained high pulse that would not come down to normal levels for several hours. I ended up being taken to hospital by ambulance. The first ambulance called out ended up in a ditch but the second one got me to hospital!

Hospital was very busy and couldn’t get me a bed on a ward so I spent the afternoon on a bed in resus being given IV fluids. I was discharged in the evening following a meeting with the consultant.

The meeting was fairly depressing. Basically we all know that there is something seriously wrong and whatever it is is getting worse. We also all know my hospital admissions are increasing yet other than IV there is nothing they are managing to do to treat me. Consequently I am kind of receiving palliative care treatment but we don’t even know if I am palliative. We don’t really know a lot. The consultant is getting in touch with all the departments I’m seeing and going to try and get them to collectively come up with a plan moving forward. What can they do when I go into hospital for example as the current sticking plaster treatment is not proving enough and I’m still deteriorating? What is the plan going forward if what is expected to happen?

Basically from this meeting it is clear that no one really fully knows what we’re dealing with and we don’t potentially have as much time to sort it out and work out what is going on potentially as expected.

It’s weird being in the middle of all of this. I, like everyone else, just want answers. I want to know what I have, what that means and what is going to happen. If I am dealing with something terminal I want to know how long I’ve got. Instead it currently feels like I’m just sitting at home waiting. Waiting to potentially get worse, waiting for answers, waiting for tests…

While I am attempting to live life the best I can with this all ongoing there are some days this seems incredibly tough. Right now I’m trying to finish a degree but I can’t apply for the jobs I was hoping to at the end of it and that can feel a bit pointless. I’m trying to find ways to still do things I enjoy and get out and about as much as my body allows, yet there is always a price to pay for doing so.

To add to the sense of pouring rain this week I’ve had a phone call from the autonomic unit to say there is a problem with funding. When I was referred to them I was living in Brighton and under NHS England, now I’m back in Scotland, I’m under NHS Scotland and both have different funding systems. The Autonomic Unit while serving the whole of the UK as the only department of their type, is NHS England. Right now I don’t have funding to be continued to be seen by them. Instead meetings need to take place, paperwork filled out and a funding application to be put together to outsource me as a patient. While they are confident this funding will be found due to the severity of the case this will take time and so everything has been temporarily halted until this is in place. This news was very rubbish to hear and didn’t come at a particularly good time. Still at least we know what we’re dealing with.

While I don’t intend this blog to be depressing and don’t like posting things that are all miserable and doom and gloom, I ultimately want it to be honest and this week really hasn’t been so great.

Despite this though I do still feel fairly optimistic. For all things seem pointless and difficult sometimes, I still get to do lots of things I enjoy. I have more time to read, watch things and as I don’t need to watch my weight but rather find it and gain it so my diet is filled with all my favourite food. I’ve got to learn that it is possible to adapt to a lot of things and when one week you feel you can’t cope with something, discover that next week you can find it somewhere within yourself that you can and you can still enjoy life in the process. To be honest I’ve probably learnt more these past eight months than I have throughout the whole of my degree. I just rather I didn’t have to learn it all through this process!

August update

It has been an odd couple of weeks since returning from my appointments in London. In some ways things are no further forward in feeling better but things are being put in place now to make things on one hand easier, yet also in recognition that I'm in this for the long haul.

I had my first physio session. This went really well and the physio was lovely, helpful and has been doing a lot of research on what I can and can't do. While lots of recommendations online suggest swimming and biking, I'm not ready for any of that yet so am starting from scratch. I have some leg strengthening exercises and some arm exercises and have to keep a diary of how I'm getting on with it for a review in a few weeks. The first few days of exercises were really tiring but I'm getting into the swing of it a bit more now. For my arm exercises I have to lift cans. I found every can in the house and have been working my up the weight scale. I do have my suspicions lifting spaghetti hoops is cheating due to the holes in them!

My GP has also been amazing. She's just gone on holiday for several weeks but has taken readings on dysautonomia and connective tissue disorders with her. Before she went, she and another GP sat down and made a hospital admission plan for me as well as updating my notes at the surgery so that if I turn up I'm taken very seriously. I'm very glad she did this and have already ended up putting it all to use- though I would have rather not have had too. My last appointment also showed I've lost even more weight and am now off the scale for the online NHS BMI chart and am down to kids doses of tablets. This was disappointing news as I've been eating more and had hoped to at least have started maintaining weight. Never mind though- all the more reason to increase my chocolate intake!

My Mum also deserves recognition for everything she is doing to help me at the moment. She's often up at 5.30 in the morning to make sure I have everything I need for the day and am ok before working a long day and coming home to have to help again as there is a lot I can't do unattended or need a lot of support with. Neither of us obviously expected this but she carries on and doesn't make a fuss about how much she has to do.

Unfortunately I've done a terrible job at staying out of hospital! On my bucket list I wrote in January that I wanted a year of being hospital free, I now think a month would be an achievement! I had another bad weekend with fevers, pains and dizziness and went to see the doctor the following week who sent me straight up to hospital to be admitted. I spent some time in resus and then three days on a ward attached to drips- however thanks to my hospital plan they knew what I needed and it was a relatively quick stay. The consultant though did reiterate that they can only symptom manage as much as possible and they are expecting me to be admitted every few weeks as I have a flare and can't cope at home. Not really the news I wanted to hear again but I do feel better with the plan and knowing what is happening.

With my increases of hospital admissions I've also had an increase in falls and with an increase of falls and increase in injuries! I've managed to split open my lip, shred my hands falling over with glass and had two head injuries in the last few weeks as well as an assortment of coloured bruises. Luckily I have a high pain threshold and nothing has been too serious.

While the last few weeks have continued to be challenging I've also realised how lucky I am. A couple of years ago I spent time working in a hospital in Uganda and got to spend time going out on palliative care and physio therapy outreaches. People didn't have access to strong pain medication or wheelchairs, there wasn't facilities to work out what was wrong and if it was fixable and yet I get all that and it's free thanks to the NHS.

I also have a support network and know if something goes really wrong someone will be there and will help me to pick up the pieces.

I don't have to worry about not being able to make meals, or do housework and if I can't get out of my pjs one day it's not the end of the world. For all that what is happening is terrible I've realised just how incredibly lucky I've been in all of it too.

To end on a positive note I now have a bird feeder outside my bedroom window and get regular visitors now throughout the day!

I also managed to make it out for a short trip along the seafront, thanks to Rollo, on my Mums birthday. I was worried I would spend the day tucked up in bed so this was a big deal. The dogs came too and we returned to make cake with a lactose free recipe!