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!

Rollo’s Mission Commences: the London Episode

As previously mentioned while in London Rollo and I set out on the start of what has become our mission…

This mission was planned on the train on the way down south, partly as a distraction from the journey and partly in the quest to find something positive in everything…

Now Rollo is here and has been personified it seems only right that he should be entitled to adventures! Consequently we decided to see how many places Rollo could be photographed in. The reason behind this is threefold; it encourages me out and about in the chair. This is important as it would be incredibly easy to become isolated, stay at home and refuse to use it. Going out in the chair does make me feel unwell, but not as unwell as standing. I dislike being stared at which invariably happens and also once you're in a chair people automatically assume you are nonverbal, can't think for yourself and are deaf. Consequently the person with you gets asked all the questions on your behalf and you become, while there for being stared at, invisible in relation to everything else. With this it would be quite easy to stay in and I now fully understand how this happens to wheelchair users. HOWEVER the psychological benefits of getting out and about far outweigh any physical side effects or recovery time I may have later. With a mission and purpose with Rollo it's easier to focus on the positives of being out and ignore the rest. It helps to keep things in perspective.

Secondly, it turns Rollo not just into a mobility aid but also is fun project. Shoes are a necessity and for other people wheelchairs are. Both should be normalised as they carry out similar jobs and purposes. Rollo having adventures, helps to normalise this. He gets me from A to Z and it may as well be made fun along the way.

Finally, it helps to challenge the stereotype that everyone in a wheelchair must be old and not able to stand or walk. Rollo when possible has been photographed without me sitting in him, when I can stand. Not everyone in a wheelchair is unable to stand and this assumption is very problematic as it leads to people being accused of being wheelchair users under false pretences and getting abuse from this. Photographing Rollo, in a small way, helps to combat that.

Rollo rolls round London…

London was the perfect place to start this adventure. Tourist sites and monuments galore and all in a reasonably close distance together, this was clearly the place to begin.

While setting out on an adventure of this sort, the first task in hand is getting to the starting point. Easy if your travelling on legs, not so easy on wheels. The London Underground is becoming more accessible over time but having been built so long ago this is not a task that can be completed overnight or potentially completed at all. Transport for London seem really good on accessibility however and can provide you with a 'I need a seat' badge if you get the tube, have a map of the stations that are step free and wheelchair friendly and if you book it well enough in advance can even provide you with a travel mentor for your first few journeys to help you find your route, get used to being in a wheelchair and getting on and off transport and give you some support.

However, with staying in a hotel that was near the hospitals and accessible I hadn't looked up any of this in advance. Unfortunately, we were no where near a station that was wheelchair friendly and I didn't have enough notice to book a mentor to work out buses. I don't like buses anyway so this was quite stressful. Consequently, we decided we would walk everywhere!

Walking round London was a completely new experience as I normally get the tube. However, I really recommend walking as there is so much to see above ground that could be missed from ornate buildings to parks, window shopping to blue plaques. Admittedly a journey that takes 6 minutes underground taking 45 minutes to walk or roll can seem a bit excessive but sometimes necessity wins.

First stop on our tour was St. Paul's cathedral. A very famous site, it towered over us, to such an extent that Rollo and the cathedral were hard to get in one photo- so we made do with a sign outside! There are a lot of steps at the front but there is an accessible entrance round the side which also means you skip the queue! (There are some benefits). We didn't go in but I did stand up for this photo while my Mum shouted 'it's a miracle' and many tourists stared!

Stop two: opposite St Paul's was a bagpiper busking. Having a couple of double takes about how Scotland had arrived in London, this seemed a good photo opportunity for Rollo! Turns out the piper is from Bathgate but frequently plays in my nearest town and plays in London for a couple of weekends a year. The piper got into the spirit of the mission of Rollo and posed for this photo while playing a tune!

Stop Three: the Millennium Bridge. So many people! So many people whose reaction to a wheelchair is to stop directly in front of you and stare as if you are the first wheelchair they've seen! So many people to navigate round! Apparently when the millennium bridge was first opened people got sick on it because it moved. Luckily they seem to have changed this and we wheeled our way across and saw some police speed boats carrying out some sort of task on route.

Stop Four: the Tate. Again we didn't go in but this seemed fairly wheelchair friendly. Also outside is a great place to people watch! There were several buskers and street performers next to here too and a lot of other wheelchair users who had also come for a spin along the river bank.

Stop Five: the Globe and a portrait of Shakespeare. By this point I was getting a little bit too tired to stand out the way for photos so here I am with Rollo in the second picture. There were quite a lot of cobbles along here which made for an interesting journey but definitely more difficult for the Rollo pushing members of our mission squad then for me.

Stop Six: Sir Francis Drake's boat. I didn't know this existed still until I wheeled on by. It definitely looked like it could be old enough though to be the authentic thing. Didn't spot any pirates.

Stop Seven: Tower of London. I really want to visit here one day but this was a quick pass by as we started to think about returning to the hotel. Looks interesting though!

Stop Eight: Tower Bridge. The biggest part of our mission was working out how to get across this or how to get on to it. The footpath along the riverbank suddenly turns into steps up into the bridge to access it. However in following our noses after a bit of back and forth we managed to get up into the town away from the bank and find the road that goes across, even spying some very fancy restaurants as we rolled along! The bridge was a bit claustrophobic as being at a lower height I could see above people anymore and there were a lot of people! It's a bit like being a child in a crowd again and I had forgotten what a frightening experience that is. Survived though and had a celebratory slush puppy at the other end (me not Rollo).

Stop Nine: the Shard. Impressive building and it makes a fairly good compass point to work out where you are. By this point I was feeling ill and ready for a nap but London and Rollo mission was almost complete!

Stop Ten: Gray's Inn Pit stop on the way back to the hotel. While my mum dealt with her blisters from walking (another wheelchair bonus), I had a recovery lie down on the grass and Rollo, well he held the bags!

So the first Rollo trip has been completed and I think it started well!

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.

An Enigma wrapped in a Mystery

Last Monday’s post didn’t happen as planned as I had an unexpected hospital inpatient stay starting a few days before usually posting and then haven’t managed to find a good enough internet connection to post since. My hospital stay morphed into nearly a week’s package holiday courtesy of the NHS. It was even sunny, I had unlimited drinks and an ensuite room…well, OK, I couldn’t go outside, it was only water and it wasn’t that much fun.

I really didn’t feel well towards the end of last week but couldn’t work out what exactly was wrong. I just didn’t feel right and kept feeling fairly unreal. By the weekend I was feeling really bad, and could not easily get out of bed. I had a really horrible headache, severe joint pain and nothing was making it any better. Eventually I gave in and a phone call to NHS 24 followed, they wanted to send out an ambulance to me as my SATS by this point were also really poor but as that is fairly normal for me, we managed to persuade them not to (it’s quite bad when you suddenly realise what would be an emergency for most people has become an everyday experience). It was decided that the out of hours doctor would visit me at home. Ten minutes later the doctor rang and it turned out it was my usual GP on call and she thought I would probably need to make my own way to the hospital to be seen as it sounded quite serious. Fast forward through time and I was in the car on the way to hospital when I felt really, really strange and horrible. I kept becoming incredibly faint (thank goodness for seatbelts) and then got unusual pins and needles down my left arm which felt like I was being pixelated. My Mum later told me that I went the oddest colour she has seen me go yet. Arriving in the hospital carpark, this continued and I was somewhat embarrassingly rescued from the car by paramedics who took me into A and E, causing everyone to stare at me. By this point I was a sort of incoherent heap so they decided I couldn’t speak English! Turns out if you want a way to skip queues in hospitals this is the way to do it! I got taken straight to a bay, had two nurses and a doctor appear within seconds, had an ECG, cannula and bloods taken in the time it would normally take me to give my name into reception.

Other than showing sinus tachycardia my ECG was clear, so they thought I was probably going into some other type of organ failure. Only then my bloods came back and didn’t show that either. I was becoming a bit of a mystery or to quote the consultant ‘an enigma wrapped in a mystery’. It was obvious something was extremely wrong as I couldn’t sit or stand up without setting off heart monitors (with a significantly higher pulse than my usual tachycardia) and sending people running, and when I had a stand test I couldn’t manage this for very long and make me extremely faint and caused tremors (not fun when you have joints that don’t do there job anyway). I was admitted to the ward for observation and attached to many wires, given IV fluids and told we would wait and see what would happen.

What happened was I continued to get worse and the next morning my eye sight had almost completely gone. This is the scariest thing I think that has happened to date. I also had such a bad headache that it made the pain of the shoulder, I am good at dislocating, seem nothing in comparison. To say it was horrible would be an understatement. Luckily I had timed having this flair up very well, as there was a visiting consultant at the hospital for that week only who knew about dysautonomia (messed up autonomic system). He thought this was probably just all connected to that, gave me even stronger doses of morphine, antiemetics and increased my IV. He also came up with the genius idea of drinking ice water. The ice works to constrict all your blood vessels and so helps your blood flow better instead of pooling (which is what my body now does), as blood vessels constrict this reduces your heart rate as you don’t have to work so hard to pump blood back up through your veins and also brings your blood pressure back up. Basically ice is a amazing and more effective, in this case, then tablets. Unfortunately he did say that there was nothing they could do in anyway to cure me and there are no facilities anywhere near here to investigate all they could do was try to make the situation as bearable as possible and apply a sticking plaster until I can see the experts in London.

I had several days of the ‘sticking plaster treatment’ and yesterday afternoon was allowed to go home armed with yet another exotic cocktail of medication. They suspect that as my body is really not working properly I am struggling to get blood and oxygen transported round which is what is causing me to be extremely unwell. I have also now lost enough weight to flag up red on everything and been told that if I lose anymore I will have to go down to child doses of tablets because my BMI will not be enough (this is despite me still eating).

While I am home now, my pulse continues to be extremely erratic and now I am off IV I’m back to a very low blood pressure again. Even as I was getting ready to leave the hospital I was still setting off heart monitor alarms but unfortunately there is nothing else that they can really do at the moment. Everything is depending on London. This is very frustrating, exhausting and I am learning not having answers is not something I can cope with very easily. However, I am now only a few days away from the London trip and at least I am home for the time being.

I now have an appointment in a few weeks to make an emergency plan for when I’m admitted to hospital of what I want or don’t want to happen.

Meanwhile this has given me an unexpected holiday from studying and a chance to watch more Doctor Who episodes! My wheelchair arrives soon so I am busy thinking of names!

Top 10 Quotes for Chronic Illness

My last week has consisted of Doctor Who binge watching (the newer series starting with the 9th doctor). I only owned season 1 so have now seen it three times and I think I might be becoming addicted. Season 2 arrived today so I shall now start watching that. I missed out watching it all first time round as I grew up for the most part in a TV-less house and somehow it passed me by so I’m making up for it now!

I really like that with Doctor Who- no matter how bleak something may seem there is always a spark of hope remaining. Good ultimately overcomes evil, however it points out that sometimes this must come at a cost. There is also integrity and a case of doing the right thing too as well of course as complete escapism- I mean you can’t get further away then a different planet in a different time period! This however inspired me for this blog post. Which is basically things that inspire me!

I am a collector of quotes. I have a notebook where I copy down any I like and my walls are dotted with post-it notes with my favourites. These have taken on a bit of a new role since I’ve become sick. I like having ones up that remind me that things aren’t all bad, that there is good in everything but yet also don’t point out that everything has to be good all the time. Being ill I’m learning (or trying to) that it is ok for things to sometimes be far from fine and that that is simply part of the process of being human. So here is a list of 10 quotes I’m currently finding most helpful.

The human soul has still greater need of the ideal than of the real. It is by the real that we exist; it is by the ideal that we live. Victor Hugo

I like this one because it points out that it is fine to still have ambitions, imagination and dreams and not have to just focus on being sick and the present. In fact it is sometimes these things that get you through.

Everyday you either see a scar or courage, where you dwell will define your struggle. Dodinsky

This quote I feel is really important. It would be very easy to become a ‘victim’ of your illness and just to focus on that, it can be quite hard not to. Often I find myself thinking that because I’m ill I don’t have as much value as a human, I can’t contribute and I just take up space, resources and people’s time without being able to give anything back. This helps me to think that it is a decision to become a victim of becoming unwell and feel sorry for myself and instead I need to focus on what I am learning from this experience and what I can still try and do.

It takes a lot of courage to see the world in all its tainted glory and still to love her

This is very similar to the last quote but instead more outward looking. I can look at how awful every situation is or realise how lucky I am to still see certain things or to have certain experiences. At the risk of sounding extremely cliched I do think I’ve become better at appreciating the smaller things these past few months.

It is no bad thing to be lost in a fog or at sea. When land comes into view again you will appreciate it with a keenest that is denied to those who know only the shore. Heidi Thomas.

I heard this on a TV programme a few months back when I had just started becoming unwell and really had no idea what was going on. It resonated, I had to rewind the programme and copy this out. I know there is a high chance I’ll never get better, but even on days I can do a bit more I appreicate being able to go out in the garden or visit someone even more. Everything has taken on a completly different value now.

A secret to happiness is letting every situation be what it is instead of what you think it should be.

I am very bad at this and am trying to work on it. Comparing yourself in the present to where you think you should be or where other people are is just setting yourself up to be miserable. I am finding the only thing I can do is ask myself if I made that particuarl day the best it could be in the circumstances and even if the answer is hindsight is no, there is no point being annoyed about it, only change it next time.

Once in a while, amidst all the bad days, you’ll have a good day. A great day eve. Make sure you remember those days. Keep them safely in the pocket of your coat or in a jar on your desk because you need to know that there are and will be better days. You need to remember how on those days you feel all warm inside, like you’ve just drunk a hot cup of tea. Hold on to the warmth and never let it go.

I love this one! Not sure how much it counts as a quote exactly but I found it, copied it out and have stuck it on an empty jam jar. I now fill the jame jar with folded pieces of coloured paper with anything that went well, of details of a day where I felt a bit better or anything that made me happy. Then on bad days when I feel I can’t continue with life like this, I can look at the jar and remember it is not always like it and that those moments are worth living for.

When you get stranded, the way to start moving again is not to search for an answer but to find a new question to which your life can be the answer.

I feel this needs little explanation but a better way of trying to understand purpose in life and moving forwards instead of focusing on the ‘what ifs’.

I believe in the sun even when it is not shining
I believe in love even when I cannot feel it
I believe in God even when He is silent.– Written on a cell in Germany during the Holocaust

I think this is one of the most powerful quotes there is.

We may lose or we may win but we will never be here again One Republic

This quote is from a One Republic song and has followed me throughout life since I was 18. Living in Uganda, a house mate was a huge One Republic fan and we had this up on the wall. It helped to get through culture shock, homesickness and appreciate living abroad. I have since copied it out and put it up wherever I have lived since and it always reminds me to make the most of each moment, take opportunities as I can and remember as well that the bad moments don’t last. I think it is a good quote for life.

If you have any quotes feel free to comment with them below! 🙂