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!

A Sight Seeing Trip of London Hospital Departments

A bit delayed posting but I have been buried in the depths of journal articles and textbooks this week for my dissertation and emerged today to discover somehow it is Friday already!

My dissertation is due in September and I keep swinging between thinking that means I have plenty of time to then having a panic over how much I've got to do and being convinced I will never finish it! Luckily a week off of studying in London gave me a break from it and I've returned with renewed enthusiasm for studying again, hence my unintentional hibernation.

Last week was my much anticipated week of hospital appointments with specialists in London. I was very anxious before hand as a lot of pressure had been placed on this week for answers. I was mostly terrified I would get there and they would say, once again, that I was in the wrong departments and there was nothing they could do. I think there is also a fear of the unknown as when you don't fully know what is going on or is wrong you know that getting an answer could prove devastating, give you hope or just keep you confused depending on what it is.

My week in London did give me answers, however it has now also posed a lot more questions too. What it has confirmed though is that something is very wrong and it's not straightforward. But then where would the fun be in getting ill unless you do it in style!

After what was definitely the most horrible train journey of my life (having to sit up for ten hours when I can't normally manage more than two did feel like a form of torture).

My first appointment was with tropical diseases. As my symptoms first emerged after living in Uganda and then got significantly worse post Tanzania this was one of the first departments I was signposted to, where people took me very seriously. I've now seen my consultant here several times and I am sure he has taken years off what could have been my potential diagnosis journey through his interest and speaking to different consultants across departments. It was him who first mentioned POTS and he managed to get a Harley Street dermatologist to look at some unidentified hand rashes I keep getting who said- that looks very abnormal, your reacting to the sun and you probably have something autoimmune also going on too. The Tropical Diseases department have now taken 39 bottles of blood from me so I have been checked for all sorts of diseases, illnesses and parasites here. Only there are still no answers.

Unfortunately with the way funding in the NHS works, I was told they couldn't give me anymore appointments as I now count as a Scottish patient and so can't be seen. This is very frustrating as there is no equivalent within Scotland and tropical comes under infectious diseases. Fortunately my consultant had undergone a lot of paperwork and speaking to people and they agreed I could have a final appointment.

While everything has come back clear or only slightly abnormal they are more convinced that something is wrong and it's probably something very rare and obscure. I was very hypovolemic (low blood volume) on the day and with my deterioration over the past few months they were not surprised I was in a wheelchair or had had more hospital admissions. While there was nothing they could do on the day and no answers they could give me they did take a final set of bloods and have put in for referrals with specialists in Glasgow in rheumatology. I also had the experience of being interviewed by medical students who had been brought along to hear of an unusual and interesting case who asked me all sorts of questions from 'what does it feel like when your pulse is very high' (strange and like I'm not very real) to 'have I been bitten by a bat' (no).

My other main appointment of the week was with the autonomic unit. The GP who referred me wasn't sure if they would see me originally as it's hard to be taken on as a new patient however not only did they agree but I've managed to overcome the funding problems too by being once again an unusual case. My appointment here lasted an hour and 45 minutes and consisted of a lot of questions and also some practical tests to look at my joints, pulse, reflexes and nerves. This was interesting as I learnt from this that there is more wrong than I had realised. For example I have extremely altered senses in my hands and feet and can't feel properly. I had no idea this was the case until I started having pins stuck in me! My heart is also not only fast but skipping beats and I have significantly different blood pressure readings in each arm when my heart is struggling. The consultant was very helpful, however, like everyone else said 'we don't know what is going on and that I possibly have something extremely rare'. However he was able to answer a lot of questions I had. It turns out I'm not allowed to fly anymore, that lots of people with things like this will everything stop deteriorating and plateau and that when they say I need to keep exercising this does not mean go for a hike or go to the gym but rather carry out muscle strengthening exercises while sitting down on a couch at home!

The big news though from this appointment is I'm being admitted as a patient for a week of tests at some point later this year. I've been warned the week will probably be horrible as they deliberately try to make you feel ill to see what happens and why your body isn't responding correctly, however I'm very keen to get answers and so I'm sure it will be worth it in the long run!

Since coming home I've been contacted again by tropical diseases and even though they can't keep me on as a patient there they have found a way to give me phone consultations. My consultant has also been speaking to people around the world about my case and some other people have taken an interest. My blood work is being sent off to an even more specialist lab then theirs and he is working with some other tropical medicine, microbiologists and neurologists to try and find answers. I feel very lucky right now that I'm being taken so seriously and have people trying to get to the bottom of it all.

While the week was extremely medical and all I pretty much did was attend appointments and sleep, I did get to meet up with some people, which was really lovely and stopped me feeling quite so isolated. It has really helped my mental health too and I'm feeling a lot more positive about life and everything else again- thank you to everyone I met up with and spoke to during the week!

I also embarked on a mission with Rollo (the wheelchair) however that I think requires a blog post to itself…

My First Set of Wheels

Rollo arrived this week. Thus named as when I was little I used to call the wheelchair my Grandad was in a 'rolling chair' and now naturally my wheelchair has been re-termed, by those who remember this, as a rolling chair too. Rollo has become it's nickname.

Rollo is a small self propelling wheelchair but I have to be pushed quite a lot of the time as I don't have the arm strength or energy yet to wheel myself any length of time. I can wheel up and down the hall of the house and turn around on the spot now though and I managed one small shop without help. I'm getting physio the week I come back from London to help with exercises to build my arm strength and also try and find a way to better support my shoulder that I keep dislocating when I use that arm.

My wheelchair arrived this Friday with a slightly embarrassing moment as the delivery man thought it was for my Grandmother! The stereotype that you must be old to be a wheelchair user is becoming apparent.

The dogs have very mixed reactions to Rollo. Shep has taken it, as he does all things, in his stride. He does have a habit though of coming and lying in front of the wheels so I have to be careful not to run him over. However other than sitting next to it he has given it no more notice. Floss meanwhile started off terrified of it and wouldn't even been in the same room it was in. She has gotten over this now, although, is still not keen and doesn't like it if I'm not sitting in it.

We decided I needed to get out and about in it very quickly so I wouldn't get nervous and avoid using it. Mum and I took Rollo for a test drive up and down the track leading to our house. This taught us Rollo is easily defeated by cattle grids. Hills are a challenge equally for going down as going up. However, I was outside and got the furthest distance for a while.

Next level of becoming a wheelchair pro meant taking Rollo into the world where more than just cows, herons and gulls could see me. We headed into town. Unfortunately it was throwing it down with rain. First mission therefore was to find a raincover for Rollo and me to avoid going for a swim rather than a walk! It turns out when you live in rural Scotland nobody stocks them. Even chain shops that normally sell them don't stock them here so I was a bit stuck. After some improvisation I ended up with a poncho and a bag over my legs. The raincover issue is still to be resolved but I now have a catalogue for this. It turns out however as with all things mobility/assistance aids- all thought is given to practicality and none to potential fashion conscious users. While I wouldn't say I'm particularly fashion conscious with grey or tartan being the only options for everything wheelchair related, a fan I am most definitely not! Unfortunately nobody seems to have noticed this gap in the market within the UK yet, although there are some websites in the USA such as 'pimp my wheelchair' which have and you can get everything from wheels that light up to custom designed cushions and gloves, drink holders to nice looking wheelchair bags!

The trip out to town was an eye opener to how unaccessible many places are. Many shops have steps and so can't be accessed, others have aisles or items so close together there is not enough space to wheel down or turn. It's also strange being shorter than everyone again. We had some fun as people don't like to move to one side to let you through and continue to walk three in a row along a pavement or cut in front of you last minute. However for all that was difficult people stared at me less and I had none of the comments I had been warned about getting. Even when I stood up from my chair to get my train tickets for London (the counter was a lot taller than me) this didn't cause shocked reactions that a miracle had just occurred so that was good.

Rollo is not the first set of wheels I had hoped to get or in any way imagined to get, yet like getting my own car, this does have the potential for considerably more independence than I've had since getting ill. Therefore as much as my feelings where mixed about becoming a wheelchair user I actually think this could be a positive step. It's really exciting to be able to get out again and go further than I've been able to in months. It's also the first time there has been a glimpse that I might be able to do things by myself again. Best of all though was that I was out and was able to spend just over an hour doing normal everyday activities and did not once feel faint or like I would throw up. A novel experience that has not happened in months.

Collecting Evidence and being a Spy

Evidence has been collected…

Data has been gathered…

A case has been made…

There has even been a body involved…

…Only the body isn’t dead and it’s mine!

Being close now to my first week of hospital London appointments I have been busy trying to collate as much evidence of what is going on as possible. The thing is the symptoms are all a bit strange and not always possible to provide evidence of on command. As a result, I’ve been armed this week with camera and notebook to record everything that may be relevant. To taking pictures of having one leg that looks like it belongs to a snowman while the other simultaneously looks like it belongs to a smurf (I have extreme circulation issues) to photographing oximeters showing oxygen levels in the 80s to my pulse changing from 62 to 190 from simply standing up. I also have alarms going off every 6 hours to remind me to check my blood pressure. I am basically seeing what it would be like to be famous and paparazzied. The real reason though is I’m determined to hopefully get as many answers as possible in a few weeks. The only thing is I’ve become so used to many things that shouldn’t be normal it is hard to know what is a symptom and what isn’t. This has caused some interesting discussions when I’ve been in trouble for something that should have been a 999 call resulting in me ignoring it all and wondering why I feel really horrible. Most doctor trips and many conversations with my Mum have now led to an ever increasing list of when I must call an ambulance.


To keep with the crime theme I have also been electronically tagged this week! The only difference being my electronic tag is attached to my wrist, not my ankle (and I can take it off). Despite the fact I really didn’t want to I have finally given into Telecare. This is a system in which I have to wear this tag at all times which has a button on it that I can press and also a device that can detect a sudden change in space so detects if I fall down suddenly. From either of these, an automatic call is made to a centre, which will call an ambulance for me if I’m unable to (unconscious or can’t get to a phone) and will also alert other people on a list of contacts they’ve been given. It’s a pretty clever system and if I was about 9 I definitely would have pretended I was a spy with this device on my wrist (ok… I might of anyway!). Only downside is nobody has yet seen the market to make these look vaguely fashionable…


In other news, I managed to, for several days, trick my body by deviating from normal events. I’m no longer allowed to eat meals because the results are disastrous. Instead, I’m now on a diet of eat-a-very-small-snack-an-hour. It worked for several days and then my stomach cottoned on that it was being tricked and is now deciding not to comply! I’m currently awaiting to see if a new cocktail of drugs has been found for me to combat this.

I’ve also been issued with morphine at home so a significantly less number of hospital trips as a result of pain lies ahead. Yay!

The other medical event of the week has been a referral to physiotherapy with home visits. I’m not too sure how long this will take.

Non- medical related, I got my results back from another two essays this week and simultaneously got my best and worst degree results so far. Luckily nothing too disastrous and as long as nothing goes too badly with my dissertation I’ve got my fingers crossed to graduate with distinction. However, if I’m honest I feel a pass shall be a good enough achievement as I’m down to about an hour only a day of productive study time.

However, the biggest achievement of the trip goes to my trip to Tesco’s! I may have only managed an aisle and gone at a time when there were no queues but this was a massive achievement for me and nothing disastrous happened in the process! Who knows next week it could be Ben Lomond!