My bed

Sorry it's been a while again, but as I've said, I don't know who I'm apologising to since nobody actually reads this...
The subject of this post is so, because I seem to have spent a lot of time in my bed recently, due to bad sleeping and very bad pain. Since I can't sleep very well or very easily, once I do sleep I get left alone (at the weekends) until 12 or some such time. However, when I have to get up at 7 and can't sleep until 4, you can see how that doesn't work out. So sometimes, I end up missing a day of school because I'm physically too tired to be able to get up and leave the bed, let alone the house.
Another reason I'm here often is the pain. I've started a new type of physio in the "gym" which isn't going well for me.
A) I believe they think I have "backache" (which is an extremely over simplified and patronising term for what is actually chronic severe pain) despite the fact that scans have shown a degeneration of discs and movement of my vertebrae. As well as the fibromyalgia making it worse, and probably a pain syndrome on top.
B) They don't seem to find anything concerning or odd with the fact that this is my 8th course of physiotherapy for my back, none of them have worked, and I've been doing this course for over 6 weeks with no improvement.
C) It's causing me severe pain and other worrying symptoms (pins and needles, dizziness) during and immediately after the class, and for the next 5/6 days after it. And finally,
D) My actual physio is away. So I can't see him to make this stop and to get those crutches until the end of March/April.

The reason I'm in bed now is reason C. It is now Saturday night, 4am (technically Sunday) and I'm still suffering major effects from this class on Tuesday. I'm having to be very careful because any movement and breath causes pain. I'm trying to decide if this class is worth it.. I was told to try it for a few weeks, and I've done 5 weeks I think, so is that "a few"? The problem is if I stop going I'm accused of not wanting to get better and an attitude problem- but how far does it have to go before it gets to the point where I decide that my quality of life is better without the physio. Does it have to get to the point where I'm in this pain constantly?
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Another trip...

Me and mum are off to London/ Cambridge tomorrow, to go and see my sister. I'm dreading this slightly, since we have to wake at 6am in order to get the train, and since its practically impossible for me to sleep before 3am (I didn't sleep until 5am last night) I'm not too hopeful for me being rested tomorrow.

On the plus side, we're going to go to some shops on Oxford Street, which I haven't been to for ages, which should be really nice. We're probably going to get taxis around London, not sure if we trust ourselves to a) find tube stations with wheelchair access and b) manage to manoeuvre myself onto the tube..

On a different note, I have now heard back from all of my 5 university, with conditional offers for all of them :D

Reading- ABB
Aberystwyth- BBB
Bath Spa- BBC
Nottingham- BBC
Plymouth- BCC

I'll come back to the university talk when more happens, but now its just a case of going and seeing them and deciding which offer to accept :)

Also, I have recently seen my 8th physiotherapist and an occupational therapist. The first 2 times I saw the physio I was very irritated that he assumed he knew what was wrong with me and assumed he could cure me. He actually said, and I quote: "I'm going to assume the MRI scan is normal."
After 2 sessions of that, I saw an OT who was lovely, and very helpful. In fact she told me I should be using crutches without me mentioning it, and that I should get a bath seat fitted and a support splint for my hand and wrist while writing/walking/pushing my chair.
She told me I should ask the physio if there was any reason I shouldn't have crutches, and I was dreading his answer. Surprisingly, he accepted it, assessed my walking and then agreed, so I'll finally be getting crutches once the new order comes in in a few weeks! Happy days!
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Surprising School Help...

Yesterday I was called to the exams office to "sign something". I went up there, and they told me that they had applied for help during my exams on my behalf.

They're hoping to organise 25% extra time, un-timed breaks and a separate room. And I couldn't be more relieved.

It's the sort of thing I would never ask for, but now it's been given to me I'm so very grateful....

Concerning and unhelpful developments.

Since I've last posted here, I've had my MRI scan and the first session of my 8th round of physiotherapy.

Physio annoys me. They've already done everything they could for my back, and assume all my problems can be solved in physiotherapy, rather than the crack in my spine and the autoimmune diseases... It was even considered by my mother to be ridiculous, which says something, but if I don't go I get portrayed as someone who "doesn't want to get better".

Quickly following this came another argument regarding crutches. I walk around at the moment using two sticks sometimes, and so it only seems a natural progression to move onto something designed for the purpose when I need it. But no. That'd be ridiculous.

Tonight I went to a meal for a good friend, and during the meal I bit weirdly, and chipped tooth with another tooth. A) How is this possible?! B) Surely that's not meant to happen!? Now we're concerned, because Sjogrens syndrome, which can be very related to Lupus etc can cause weak teeth and damage...

I'll keep you posted.

My birthday

Today (12th) is my 18th birthday. Since I last saw the rheumatologist, I've got appointments to see the physiotherapist (again) the occupational therapist and for my MRI scan. Hopefully at some point someone will give me something better to manage my pain, and feeling so ill.
Last week I got a phonecall from my GP, telling me that I've been taking too much of one of my medications even though I'm certain I was told to increase the dose. I wouldn't have just decided to up my own dose. As a result, I've been in terrible pain in my back and leg, and I've been just as ill. So exhausted.
However, my university application has been going well. I can't remember at which point I left you last time, but I now have 3 offers for Plymouth, Reading and Nottingham, to read history, ancient and modern history and archaeology respectively. In addition to this, I've had plenty of "disability and reasonable adjustment" questionnaires, which have become the bane of my life, as 3 lines really isn't enough to write down everything that's wrong with me. I'm waiting to hear from Bath Spa and Aberystwyth, which makes me nervous as I really want to go to Bath Spa. Until then, I have to revise for my history exam on the 20th, which should be great fun...
Back to the point of this post, ie my birthday, I had a lovely day. When I woke up I had presents, in the form of some boots, a coat and a tshirt saying "I told you so" to wear to the doctors if necessary to name a few. I went to school, where me and one other person turned up to the lesson, as everyone else was doing an RS retake, which was followed up by a trip to the corner shop to buy my first legal age restricted product (a 98p lighter :L). Me and my mum and sister and some friends went for a meal quite early, where I got the bag I loved, and then visited my grandma for cake and more gifts :), I got a dress and a cheque, and an amazing box made in india, painted with crushed gems and real gold. Its so beautiful, I'll try and post a picture. Then I went to a pub quiz with my dad and his partner, where we came 2nd and won some alcohol :L, and they bought me a new camera for my birthday! As well as a case and a memory card :).
Ultimately, today has been lovely, so many people wishing me a happy birthday, but I have felt so ill and exhausted throughout. Its hard to imagine I suppose if you haven't been ill, but its almost like becoming exhausted by watching a football match. I haven't done much at all, being in the wheelchair, but feel just as exhausted as if I had, and feel as ill as I ever did.
On Saturday evening, I'm going to have my friends over for takeaway and such. I sort of wish I could do something more unusual for my 18th birthday, but I'm too ill to really be able to do much else other than sitting, and if I feel better I can always do something later on in the year...

Christmas

As it is half past midnight, merry christmas one and all! My mother is in her bedroom doing "things" which me and my sister are not allowed to see, and I'm looking forward to the festivities of tomorrow/later even though I'm feeling less than festive.

I'm no scrooge, I love christmas. I reckon its just because its crept up on me so fast, because I've been so preoccupied with school and hospitals that it suddenly came, and "oh! It's christmas eve!"

I've somehow managed to prepare, and have bought all my gifts, but the logistics of the whole thing concerns me slightly, as I am still quite unwell. I'm sure I'll still enjoy it, but its just things like, I can't walk as far, and probably can't eat as much, or veg out on the sofa without moving for too long.

I've been so ill for the majority of this year, that it seems strange to think that this is the first christmas I'm having while being ill. I've had christmas in pain before, but never actually very sick...

My tuscaloosa heart

I've been intending on posting for a few days, but I've been quite ill so I haven't really had the chance.

I fiiinally have another rheumatology appointment this monday coming (13th) where hopefully the doctor might put me on some medication which has more of an effect than the stuff I have at the moment.

I also have an appointment for a 24 hour ECG which I'm happy about, because I've been having these palpitations for a while and quite recently they've felt quite irregular. This obviously concerns me, because apparently Hughes Syndrome (the theory the GP basically poo pooed, because I'd found out information myself) can cause valve problems (which presents as palpitations etc) so in a way I'm hoping it does show up that, so I can prove to these doctors that I know what's going on isn't right...
Only problem with this ECG is that I have a friends 18th birthday meal that evening, so I'll have this heart monitor in my dress. I guess I can just try and pass it off as an unusual necklace...

I apologise

I've neglected you slightly. I said I was going to post in the evening however long ago, but I didn't.

You can have an update though. I'm back at school, went back last Monday. Only doing half days but since I have so many frees I'm only missing 2 lessons a week. So all in all its going okay, even though I am in a wheelchair, and my school is definitely not wheelchair friendly... There's one ramp to get into the building, no wide doorways and at least one step to get into each classroom.

But anyway, I was going to tell you about my theories. I'm afraid this post might take me a while to complete because I've recently developed pain in my lower arm. Hmm...

For a start, since I have lupus, there's a 1 in 3 chance I'll also have a clotting disorder called Hughes syndrome, or sticky blood. Add to this that I have the symptoms of headaches, very blotchy skin and quite severe memory problems. And I've recently found out that giddiness is an actual symptom, for which I am now more concerned. Also, my mum had a stroke at 39 (I think?) and they never found out what had caused it, and Hughes syndrome is apparently the cause of 1 in 5 strokes in under 45's.

Also, they're suspecting now that my back and leg problems are arthritis, but I now really want them to just tell me it is so I can get things done, just simple things like doctors notes for more time in exams because writing hurts my wrist, or a note for the universities and benefits for disabilities.

As well as the arthritis, I'm concerned that I could have fibromyalgia as well. Its another thing that many people with lupus have, and it's only something that occurred to me a long time after getting the odd pains. Like someone touches me on the arm and I'll almost scream out in pain.

You can see why I'm concerned.

Good and bad.

I think these tablets are finally starting to have a good effect on me. Its mainly the little things, like less hair loss and less mouth ulcers. But I've also noticed that I've been feeling less nauseous (except yesterday when I ate the scrapings of the bowl I made butter cream in, but I think that was to be expected) and I've been sleeping a lot longer... Now that's reasonably inconvenient, as I still can't sleep until maybe 2/3am, that means I'm sleeping through my alarm at 10am until gone 12. Which is annoying.

I'm going to the doctors next week, as I've been getting heart palpitations. It's been quite fast since I've been ill, when I get it checked at the doctors and in the hospital (the last time I was in there my resting heart rate was 120. Its meant to be around 70.) Anyway, I've now been feeling them, and it's woken me up a few times in the night, and made me feel breathless, and so I'm going to go to the doctors and get it checked out. I hope I don't get sent to the hospital again... I have a hair appointment that day and I want to get my hair cut! (I'm getting a serious restyle so my hair won't be too badly affected when it starts growing back)

Also I have to ask the doctor if I can borrow a wheelchair from somewhere... The only way I'll be able to go back to school is if I can get around in a wheelchair, since I still have severe fatigue (because they're pretty sure there is something else wrong as well) and the wheelchair they have in school is unfit for human use. Fair enough, I'd rather not use it if it's going to collapse under me.

I do have theories about what else is wrong but it makes me sound like a hypochondriac, but people who know me know that I'm not one of these people who thinks they have everything. Like my Dad said, a lot of my symptoms are transferable to so many conditions (fatigue, nausea, joint pain etc) but these are the weird things, the sort of things I noticed and thought were weirs but didn't think anything of it, like being really sensitive to pain (touching my arm causing a lot of pain) and blotchy skin. I'll explain my theories later, but it does make so much more sense when you explain it. Of course I hope I don't have all these things, but at the same time I could deal with it because I know about it. Just like I was pretty sure I had lupus before they even mentioned it was possible, so I wasn't shocked when they said it was, and got over it pretty quickly.

Continued struggles

Since we're getting closer to diagnosing the lupus, it seems like my joints are getting worse. I don't think I ever really thought that my joint pains were lupus related, the main ones anyway.

For example, the shoulder that was bothering me doesn't so much any more, but my hips and knees seem worse than ever, and I genuinely think they're related to the back, as I had some hip pain before I became ill, and my rheumatologist thinks my back problems could be a rheumatoid arthritis, which would be very odd if there weren't any other joints affected.

I personally think that my walking would be much easier if I used crutches when I was in a lot of pain, but I have had a bit of a battle with my mum about this. Apparently most people with illnesses and disabilities have problems with their parents about things similar to this. My mother seemed to think that

a)I just "fancied them",

b)that using them would make me more disabled, and

c)that she basically won't accept it until a doctor says to me "you need to use crutches"

which is silly because:

a) I don't want crutches, they'd be very inconvenient, how would I carry anything?!

b) They make me LESS disabled because at the moment I can barely walk a few aisles of a supermarket (although that's partly the fatigue from the lupus) because my legs are very painful and

c) They won't do that, because they don't know how much pain I'm in, and they don't want their patients to be deteriorating.

Anyway, that's my rant over, and onto happier news. Someone I know who's had a similar chronic pain problem for many many years is today having surgery which they hope will correct her problem :) She's been suffering for such a long time, its very good news that they can help her :)

Return from the trip.

The trip was good, but long. It was a lot of walking around compared to my normal sort of routine, but we managed to get to a few outlet malls, which made it all better.

There was a lot of driving involved, about 3 hours a day, which doesn't sound like a great deal but when driving makes you feel so ill and being sat down in one position for a long time causes so much pain, it seems a lot longer than it is. We stopped every hour/hour and a half maybe, so each 3 hour journey seemed like it took all day.

We stayed at my Uncle's for 2 nights and at a hotel in Cambridge the other night, and I didn't sleep too well any of those nights. I kept waking up from pain, and feeling ill, so I didn't particularly wake up refreshed, but I rarely have since I've been ill, since one of the main symptoms is extreme fatigue, and since I was getting up much earlier than I would normally, that didn't help.

However, even though I was getting up earlier, I couldn't fall asleep any earlier at night, so since I've been home I've been trying to catch up on the sleep, but was completely unsuccessful until today. On Tuesday and Wednesday, I woke up before my alarm went off, but today I slept until gone half 12.

Also, today is 2 months I've been taking my hydroxychloroquine. This should be the window where the medication starts working. Wish it luck.

J'arrive.

Well, we've made it to Cambridge, after many stops along the way. Our hotel is very nice, and I've discovered that sitting in the car for a long time annoys my hip and knee, so we had to stop a few times for that reason. What I have noticed, is that a few of my symptoms seem to finally be improving. I think I might be growing back a little bit of wispy hair at the front, even though my hair is still falling out...
Also I think the light sensitivity of my eyes is improving, as I'd usually have to wear sunglasses in the rain, which I didn't today, and my mouth ulcers are reducing as well.
So all in all, I think this is the beginning of these tablets working. Still a long way to go, and for some reason I doubt it'll end all of my problems but c'est la vie, it all helps.

Road trip.

Tomorrow, me and my mother are taking my sister up to Cambridge, for the start of her university term. They start a bit later than most of them yes, but that's the nature of Oxbridge.

My concern is that I appear to have spent the past 2 days almost immobile, and while I'm half looking forward to having a bit of a change of scenery, and being able to see a few shops etc, the other half is dreading the fact that we're going to be away for 4 days, driving on every single one of them and doing more activity each day than I'd normally do in about a week.

We've decided to take 4 days for the journey because of me, so we can limit the amount of driving time to 3 hours a day, and we can stop as many times as we need to and stop at places like Bristol Cribbs Causeway and possibly Ikea. We'll stay with my uncle tomorrow night and Sunday night, and stay in a hotel in Cambridge on Saturday night.

I am worried that the only hotel we could get in Cambridge is quite a way out, so we won't be able to "pop back" if I need a rest, and as anybody in the same position will know, resting in a coffee shop isn't the same. While it's better than nothing, its not the same as being able to properly relax and recuperate.

My university options...

Since I'm in technically the beginning of year 13 now, even though I haven't been at school for about 5 months, and the last year before I leave school, the options for further education have been rammed into our faces for many months preceding this. Since I go to a grammar school, most of the pupils I would say want to go onto university,(obviously I can't prove this, I don't know everyone) and this is the case for myself as well. Before I began the process of the application (which is a nightmare in itself) I set the check list that I was going to base my options on.

The universities had to:

- be reasonably close to my home town (Plymouth) or the south west in general, or at least simple to get to in case I fall ill etc while I'm away

- do the course I want to study (ancient and modern history) and do it well (obviously)

- be a campus, so I don't have to traipse into a city centre to get anything, especially if I'm unwell

- have good health services around the city, and if possible a specific student medical centre on the campus

Despite these relevant and reasonable points, it was noted that I would have to apply to cities for the best case scenario as well as the worst. So there is somewhere with higher grades if my illness and pain gets sorted and I can manage almost like normal when I get back to school, and also with lower grades in case I fall ill before I leave or don't recover as well as is hoped.

Once I'd got into the mindset that I didn't have to limit my options, I had a visit from one of my friends. She wants to apply for something similar to me, so she brought me some information about places that do history with the added unusual bits that we wanted, and in that pile was Nottingham. A few of my friends have been there to open days, and were very impressed by the beauty of the city and the helpfulness of the staff and students, and I got the same impression on their website. It sounds ridiculous to be able to get the feel of a place from their website and the prospectus, but the website has all the information you'd ever want and more. They had virtual tours of all the accommodation, and details about all the transport around the campus and to the city centre, which is a few miles away but with frequent buses.

And in the ancient and modern history course, there's a module called "swearing and cursing in ancient Greece." Who doesn't want to study that?!

Also on my list is Bath Spa university. Bath university does all the sciences etc, so Bath Spa is all of the humanities and arts, but it doesn't do a course including ancient history, which seems odd seeing as the whole city is surrounded by it... But the city is great, and is home to the Royal National Hospital of Rheumatic Diseases, and the National Youth Pain Services, so I think I'd certainly be well taken care of there. Also you can get a direct train from Plymouth which takes about 2 and a half hours, the same as driving.

That benefit also transfers to one of my other choices, Reading. The course is ancient and modern history but seems mainly focussed on the ancient side, and there's a direct train from Plymouth.

The way the UCAS applications work is mainly over the internet. There are a lot of questions to answer, about your family and your choices (you can pick up to 5) and then a question on illnesses and disabilities. Ah. It had options for "physical impairment or mobility issues", and one for "long standing medical condition or illness", but none for one of each, so I've had to select "You have two or more impairments and/or disabling medical conditions". And then it asks you to explain them. There the problem arises. I doubt they will appreciate me writing "God only knows" or "your guess is as good as mine" so I've decided to leave this box blank until Lupus and some form or rheumatic arthritis are either confirmed or denied.

Once you fill out this form, you have to add in a personal statement, which is basically 40 lines of selling yourself, saying what skills you have and how they will help you in the course, and why they need you at their university instead of anyone elses.

Later on, based on all this and your teacher comments and predicted grades (lord knows what mine'll be like, last time I checked they were B's and C's, but then again that wasn't influenced by these last exam results, that were remarkably good considering I've been so ill, so hopefully my predicted grades will go up. Anyway, once the universities have gone through all that, they'll decide whether they want to offer me a place (either conditional, based on my results or unconditional, regardless of results). The problem I face then, is once they've decided whether they want me, you have to choose 2, one as your firm choice, and one as your insurance choice, if you don't get the results you needed for your first choice.

Assuming I get an offer from all the places I apply to, I will probably choose Nottingham as my first choice (asking for ABB) and Bath Spa as my insurance choice (asking for BCC). If I get the grades for Nottingham, it will be amazing, seeing as I was ill all the way through my GCSEs with my back problems, and have been severely ill through my A levels, but my annoyance with this system is, if I manage to get those brilliant grades, what if I fall ill before I got the results and decided that I'd be much better off in Bath? As far as I've found out, I'm not sure there's any way to get around this, as it seems that you're almost contractually obliged to take the place... I'm sure I'll figure it out somehow.

Day to day as the undiagnosed...

I spent yesterday at home, as I usually do, pottering about and such forth for the whole day, feeling generally rotten. I have the school and my friends sending work back and forth for me, as I've been off school for about 4 months now, but it's difficult to feel up to sitting up and writing, and trying to take in what you're writing down. Generally when I feel really ill, the sort of ill where you feel so terrible that you can't really sit down, I'll either bake, or do art homework (there's always art homework), and that's what I did yesterday.

Generally, when the weekend comes, it means I'll be encouraged to eat much better than I do when I'm home alone during the week. I don't do anything, so usually I'll have a few biscuits with my tablets first thing, and have a bit of bread at lunchtime, and then have a proper meal in the evening, when I'm more likely to be hungry.

So today my mother and I rose early, and we arrived in town at about half past 10, so we'd be able to avoid the rush in town, as it were, because sometimes getting into town is enough effort without having to deal with every single person who lives in the city running past you as well. We happened to meet some friends in town, friends who have had serious illnesses before themselves, not the same as what I have, or they suspect I have, but as she said: "being ill like that puts you in a different mindset to other illnesses".

Back to the MAU

Just seen the ICU navy doctor,(he has a special interest in tropical infections, I'm not that critical) he was very nice and good. Says he doesn't think it is something from india that's affecting me, but he's going to send a battery of blood tests to places around the country to test for all the odd sounding diseases you can get from india.
It's very helpful having friends in the nhs, they can chase up follow up appointments internally for you :) apparently they got an internal email from the medical assessment unit asking if anyone had notes for "miss D H" because they'd lost them. That entertained me somewhat :)

The beginning...

With this post, I'll try and explain what has gone on with me, up until this point.
When I was 14, in the summer of 2007, I fell down some stairs in my house, and soon after I came down with terrible severe back pain. It was a couple of months before we saw a doctor about it, because we'd just assumed that it was due to the fall and would go away, but it didn't, and still hasn't 3 and a half years on. We had always assumed the pain I was having was related to the fall, but now we're not so sure. We're thinking it may have just been a coincidence.

After a long while, I had an MRI scan, which diagnosed me with a minor slipped disc, and wasn't until I was admitted to the hospital that one of the consultants noted that the pain I was in was disproportionate to the supposed injury. From there I was referred to about 17 people at once, all of whom found nothing. From there I was sent to physiotherapy (again) and the pain clinic. The pain clinic manages all the people who are in pain, but no-one can do very much about it, which includes chronic pain syndromes, and things like fibromyalgia.

As all the investigations for my back problems were slowing down, I went on a trip around India for 3 weeks. While I was there, I developed an odd rash on the backs of my hands, which given the temperature, I assumed it was just an odd heat rash. Before I left I'd been diagnosed with Reynaud's phenomenon, costochondritis and a few other joints had been painful. 3 weeks after I returned, I fell very ill, with a high temperature, extreme fatigue, hair loss, mouth ulcers and nausea. I was immediately referred to a rheumatologist who did a battery of tests which revealed my ANA was positive, a marker for lupus, and along with all the symptoms it seemed very likely. They've started me on some medication which takes 3 months to have any effect, but it doesn't cover up other diseases, as they still think there is a possibility of a tropical infection/disease from India. If I had lupus from before I went to India, as it would seem from the symptoms I had before I left, the conditions and bugs probably made it worse for it to be affecting me this much now. Since I've been ill, I've missed 3 months of school and I'll still miss another while yet.

Since we have seen the rheumatologist, the idea has arisen that some variation of rheumatoid arthritis is affecting my back and other joints, and I have a worrying suspicion that I share a lot of the symptoms of Hughes syndrome, one of the associated conditions of lupus, and possibly sjogren's as well... It may sound like I'm a hypochondriac but once you see the symptoms in yourself, and so many other people with lupus have these things as well.

I'm seeing an intensive care unit doctor, with an interest in tropical diseases in the medical assessment unit tomorrow. Hmmm.