Tuesday, 7 October 2014

Trigeminal Neuralgia/facial pain Awareness

Today, October 7th, is the awareness day for trigeminal neuralgia and other facial pain conditions. I have had facial pain for several years now and I don't think I can begin to explain how severe the pain can get at times. I get very sharp, electric-shock-like pains, particularly in my temples and along my jaw, in addition to vice-like aches in my forehead and cheeks.

Soon after the pain started, I was started on Gabapentin and referred to a Maxillofacial surgeon, with a tentative provisional diagnosis of Trigeminal Neuralgia.

Once seen by the Maxillofacial surgeon I was sent for an MRI scan to rule out a cerebellopontine angle tumour and look for compression of the trigeminal nerves. It came back clear.

The conclusion was reached that my facial pain and related symptoms are, in fact, likely to be as a result of my ME/CFS, which makes sense as I get nerve pain elsewhere.

Around the same time I was developing increasing problems with the sensation in my face, in particular problems with crawling sensations and tingling in my lips and tongue.

My dose of gabapentin was adjusted up and down a few times. Higher doses sedated me and caused horrible overwhelming exhaustion, low doses didn't really work sufficiently.

Eventually (about 6 months ago) I decided to take the plunge and change medications, both because my pain wasn't managed brilliantly, and because I had concerns that the gabapentin could be contributing to my abdominal pain.

I changed to Pregabalin (Lyrica) and eventually got up to the maximum dose (lower doses didn't work sufficiently, but each increase was vile, sending me into a very ill, semi-comatose state for a week each time). My pain seemed to be under control for a short while.

Recently though, my pain has flared up again and I suffer with headaches, stabbing pains and tooth pain on a daily basis. I have had a few occasions where I've been absolutely writhing in agony, it's awful.

I think people would think my facial pain is a minor inconvenience compared to my other problems, but when it's bad, it's far more than that. It affects my quality of life significantly and the severity during shock-like episodes is certainly as severe as any pain I get resulting from my other conditions. The pain is all-encompassing and simply cannot be ignored. I quite often literally gasp with the sudden intensity of the pain. And then it goes as quickly as it came.

I'm on epilepsy medications to dampen down my nervous system to try to control the facial pain. I wouldn't risk the side effects and interactions with other meds if the pain was bearable without, but it simply isn't.

Many people have lengthy, unpleasant (unnecessary) dental treatment prior to diagnosis. Most sufferers are on daily medications. People go through deep brain surgery or have treatments to damage the nerves involved to try to relieve the pain. If you look up Trigeminal Neuralgia, you soon come across the fact that it's sometimes known as 'the suicide disease' due to the high rates of suicide in this patient population (mainly before effective medications were available, but some even now) due to the pain's severity and the condition's unpredictability. These conditions are not trivial. It's not a case of a bit of a headache or a bit of toothache. The conditions are, without doubt, often life-altering.

Thanks for reading and please do help spread the word about these conditions.





Saturday, 4 October 2014

Return to Uni following medical leave

Returning to University following medical leave has been a roller-coaster of emotions.

Firstly, I'm elated to be back. When I suspended studies and left, I was terrified I would never be well enough to manage to return. When you get the opportunity to return to what you want to do, rather than living 'the sick life', it's awesome. I couldn't wait to see my friends, and was keen to feel part of things again. I thought things would feel more normal..

And then you get back and realise 'normal' really doesn't apply to you these days. I'm part-time, doing a phased return at the moment = abnormal. I use a mobility scooter = abnormal. I'm seriously chronically ill = abnormal. I'm in a new year group with all new people = abnormal. I can't physically do what I want, when I want = abnormal. You see where I'm going.. I realised just how abnormal my situation was when I had returned to Uni and was surrounded by healthy people my own age- they have SO. MUCH. ENERGY!

I, on the other hand, am severely lacking in energy. Living away from home, I'm now very reliant on friends- they have been utterly amazing, but it's frustrating not being able to do things for myself. I'd forgotten the amount of time I spend in a typical day staring at things just out of reach, wishing they would jump into my hand. Sitting in bed at the end of the day contemplating getting changed into pyjamas is horrific- you know you're about to flare your pain up to an extent that will make it difficult to sleep for hours... Not easy.

Being chronically ill is beyond hard. You are exhausted and it's exhausting- there is so much hassle trying to sort everything and juggle things. And then the more you think about it all, the more exhausted you get, and the more difficult it becomes.. Ugh.

Being back with all the normal life stresses reminds me how incompatible stress and chronic illness are. Stress really, really flares up my symptoms. But keeping calm and relaxed is easier said than done while facing huge challenges. I consider washing and dressing huge challenges, but returning to Uni means facing challenges much greater.

It's difficult being new to a year group. It's almost tempting to creep in, hide, quietly get on with things, then creep out (although creeping quietly on a whirring mobility scooter is fairly impossible). It's particularly hard when other people already know one another. It's yet harder still when you don't trust your speech not to play up, remembering names and faces is practically impossible, and you're feeling decidedly 'different'. You feel exposed and alone.

Thankfully, my group have been lovely, and I'm lucky in that I have support workers, which means I always have someone with me, so even from day 1 I was never really actually alone- perfect!

My symptoms, on the other hand, have been far from perfect. I always knew my symptoms would increase on starting back, so it hasn't come as a huge surprise, but it's hard. Pain, fatigue and nausea, among others, have all been severe at times, and it's difficult when you know that it's something you're choosing to do that's the cause of the increase in symptoms. I don't want to cause myself more pain, but I have to accept that doing what I want to do is going to cause my symptoms to be at an even higher level than they were when I was doing very little and resting a lot. It's just the way it is. My facial pain has flared up again (despite being on maximum dose Lyrica) and I now have tinnitus- oh, the joys.

I wanted to be much healthier when I started back than I have ended up being, but you have to hope for 1 thing, expect less and accept much less quite frequently with chronic illness, in my experience. My pain and fatigue levels are still fairly nasty, I still get dizzy and nearly faint a lot, and I still feel utterly rough. On a positive note, I (briefly) met my weight target a few weeks before starting back!!! It's only taken 3.5 years, haha. I've since lost around half a stone, but at least I had got up to where I wanted, so I'm away from the danger zone! The threats of tube feeding seem like a distant memory which is rather nice!

The other fairly recent improvements were in my speech and balance. My speech got a lot less glitchy when I started wearing my compression tights following my NMH diagnosis, and I started losing my balance less often. I had also been practicing my balance too, so would like to think that also helped a bit. Both have become significantly more problematic again since starting back at Uni and getting extra-exhausted, but hopefully will improve again once my body is freaking out less- fingers crossed. Difficulty communicating because of my stutter is really frustrating and embarrassing..

Having reached a severity I can't even bare to discuss while I was on medical leave, I'm scared about ending up back there. In fact, terrified may be more accurate. An experience like that stays with you, whether you want it to or not. I faced limitations only a minority of people my age have faced, and I can tell you that it's frightening, undignified and soul-destroying. I hope no-one reading this ever ends up in that state, and if you're currently severely affected, I really honestly hope things pick up for you and wish you all the best.

Everybody has been really lovely since I started back- staff, students, everyone. I couldn't have wished for people to be kinder or more accepting. I have, however, been asked 'what happened?!' multiple times; I didn't understand what the question was getting at the first time, before eventually catching on that people were assuming I was using my scooter having had some sort of accident. It's then a bit tricky explaining that you're long-term ill and can't really stand/walk anymore as a result. Not quite as exciting an explanation as they were anticipating..

It's all awkward really. How much do I tell people about where I've been? I'm more than happy to be honest with them, but I appreciate that chronic illness is sometimes an awkward thing to talk about. I don't want to sound moany, but I also don't want to make light of what was, and continues to be, a seriously difficult period of my life.

I'm also, understandably, getting people asking how things are going since starting back. The truth is, I'm not really sure. I'm doing very little yet it's really hard, symptoms are pretty vile, new/recurring symptoms are a concern, I'm having to medicate my pain more regularly due to the severity, and I'm struggling. But I expected that. The thing I don't know is whether it is sustainable. I honestly don't know whether my body can cope with this long-term.

I don't know whether things are likely to get easier or get harder. If things get easier I'll be able to increase what I'm doing and possibly get back to full-time by January, which is what I'm hoping; if things get much harder, I'll be left with no option but to suspend studies again, and then questions would have to be asked about whether getting through my course is a realistic aim. I've had a few appointments that have made me wonder whether I'm being a bit overly-optimistic about my chances of the return to uni working out, but we'll just have to see how things go. At the moment, things do, unfortunately, seem to be getting worse. The last week or so, I've been managing less and my symptoms have been getting significantly worse. It's really worrying and disappointing. I'm clinging onto the hope that it's just a flare and things will pick up again, but I'm honestly not sure..

So yes, that's the truth, although that's not necessarily the response that people are likely to get in person. I'm happy to admit that it's hard, but I like to give the impression that I'm coping, which I am- sort of. I don't know whether a relapse is imminent or not. I was asked in an appointment recently whether I could see crashes coming and the honest answer, even after 5 years, is still no, really. Sometimes, they just happen. I'm not ready- physically or emotionally, to face a serious crash, so I seriously hope it's a while before the next one inevitably happens!

To anybody who reads this because they are planning a return to uni following medical leave, my advice would be:
1) accept that it will be hard. Really hard. Get that firmly accepted before starting back.
2) have whatever you would normally use to get through flares to hand (painkillers, heat pack, easy meals etc), and be prepared to use them to help you through the first few weeks.
3) don't panic if symptoms are worse initially when you first start back, it's bound to be a shock to the system. 'If symptoms persist consult your doctor' or consider reducing your workload a bit.
4) prepare for your return in advance (if you've got time). Get your brain back to speed again by doing a bit of reading. Read over things that you will need to know. If you're well enough, build up your physical strength and stamina, even if that's just practising being sat up long enough to get through lectures. If it's all rather last minute, don't panic, just get yourself as prepared as you can be given your circumstances.
5) make sure those who will be supporting you- at home and at uni- are aware of where you're at physically and the challenges you're going to face physically, mentally and emotionally. They're going to need to be your cheerleaders, supporting you through when things get tough.
6) agree on a suitable timetable. Consider part-time options if you're not well enough for full-time.
7) get appropriate support agreed and in place. Think about DSAs, support workers etc. Disability advisors are absolute stars when it comes to sorting out all this stuff.
8) keep your fingers crossed (not literally- don't wreck your hands before you've started!). You can't control how your body will react, so it's all partly down to luck. Give yourself the best chance you can of things working out and then simply hope for the best- it's all you can do!
9) look after yourself best you can. It goes without saying that you don't want to risk ending up back on medical leave again.. It's not a sprint, it's a marathon- take things steady. Monitor how you're getting on and let people know early if alarm bells should be ringing. Stop and rest as necessary- missing a lecture is far less disastrous than relapsing from attending a lecture when not well enough. 
10) enjoy it!!! You're starting back because you want to be there- appreciate being back, remember how much you longed to be there while you were off (and remind yourself of this repeatedly when you're trudging your way through a difficult assignment..)!

I certainly don't regret starting back. It's great, I love immersing myself in my work and almost forgetting about the challenges of life for a while. It's amazing to feel like I have a sort-of purpose and a proper place in society and the outside world again. It's a relief to finally look in my calendar and see something other than medical appointments. 

It's hard (understatement), but of course that's the case! I only just improved enough to start back so I was hardly likely to be frolicking around doing a full-time timetable and finding it all a doddle. I'm doing a very reduced timetable and it's very much challenging my limits. But that's fine-ish, it's my choice, I want to be working at the maximum I can manage. I'm managing to study a little, and I'm enjoying it, which is great! Obviously I'd love to think I'll start to improve and will get back up to a full-time timetable and manage it comfortably, but that feels a world away from where I'm at at the moment, so whether that will happen remains to be seen!

I'm starting to realise that returning to uni is all well and good, but remaining at uni is the real challenge... Fingers crossed!!!

To everyone else with a chronic illness returning to studies or starting uni for the first time, I wish you SO much luck and hope it all works out for you!

Tuesday, 29 July 2014

Lots of updates! Various appointments plus last few weeks

I promised an update on my other appointments, so here goes... (There's also a general update at the bottom)

Maxillofacial unit
My facial pain is bearable at the moment, having increased my pregabalin fairly recently, so we're leaving things as they are for now.

Asthma review
Peak flow was 390, which is really good for me. Agreed to keep medications the same.

GP (PCP)
Appointment went well. Among other things we discussed my rib pain and he thinks it's my intercostal muscles. I am trying some ibuprofen (alongside my other pain meds) to see if the anti-inflammatory properties help; he said it was what he'd use for 'normal' patients so it was worth a try. I said I wasn't keen to try anything stronger than tramadol and he agreed that they would flatten me.

Immunology/CFS Consultant
Appointment was really constructive.

I said my balance had got even worse, and he suggested I got a wobble board to practise my balance.

I said my temperature was all over the place and he said it is a common problem with CFS but nothing can be done.

I mentioned that I was concerned that my hands have been shaking at times, normally in the evening, and asked whether it was likely to be due to weakness. He agreed that it was, and suggested I squeeze a stress ball and/or use a gyroscope exercise ball to strengthen my hands and wrists.

I said that I've been having some speech problems. He says stuttering is common and he wasn't concerned but if it starts causing major problems I can be referred to speech and language pathologist for vocal exercises. He said that he felt there were other things more important to focus on at the moment.

I mentioned that a GI consultant had said that he thought it was possible I have gastroparesis, but said that my nausea etc hadn't been so bad recently so I wasn't keen to go ahead with testing at the moment. He said that if it flares up again, there is someone in a nearby city who looks into neurological GI problems that I can be referred to.

I mentioned my rib pain so my vitamin D is being checked and I've been on folic acid a while so my folate levels are being checked.

Most importantly we discussed my plans for returning to Uni and he agreed that a return in September can go ahead but that I should only do 3 afternoons per week to start with. I was VERY happy to get the thumbs up to start back, even if it is only part-time to begin with - yay!

Update
I coped remarkably well living with friends for a week at my university city while I went to appointments. We had some lovely days and evenings out. I feel a bit more at ease with the idea of going back having managed relatively ok while I was there.

I wasn't managing to help out with anything really, and I feel bad relying on friends so much but I'm sure we'll work something out. I felt very aware that I need a lot more help than I did a year ago, and I also (ideally) need help that I'm not willing to accept. I muddled along ok though- I managed to keep my hair washed regularly and everything like that, which was an achievement. I've had a shower stool (for at the sink) and a bath stool (for having showers in the bath) delivered ready for September, and they helped. I was also pleased that I made sure I spent plenty of time resting.

My mobility and balance have deteriorated recently and I felt a bit unsteady getting around the flat- I need to find all the places to grab hold of/lean on and get my confidence back, but hopefully that will come with time.

I then went back to my university city a second time for my tilt test, and two trips so close together in addition to the tilt test itself, knocked me back a bit. The last week has been a bit rough.

I can't believe I've been diagnosed with Neurally Mediated Hypotension for a week already. I've been trying to look up information online but it seems to be sparse and there is real confusion in terms of terminology. I have come to the conclusion that Neurocardiogenic Syncope and Neurally Mediated Syncope are the same as Neurally Mediated Hypotension. I believe that these aren't the same as Orthostatic Hypotension; I think NMH/NMS/NCS involve a drop in heart rate in addition to a drop in blood pressure, whereas OH is only a drop in blood pressure, and it seems OH is generally seen in older people. Orthostatic Intolerance is different again- that's an increase in symptoms when upright, frequently seen in CFS patients, but it's a symptom rather than a condition. Vasovagal Syncope refers to simple faints- NMH makes Vasovagal Syncope more likely/frequent. Postural/Positional (Orthostatic) Tachycardia Syndrome is a condition similar to NMH; it is also a form of dysautonomia, but the heart rate increases by 30 beats per minute on standing- it causes similar symptoms but whereas NMH can lead to fainting, POTS doesn't. Not sure if that clears anything up for anyone and I'm not 100% sure of the accuracy of any of that, but they are the conclusions I have come to. It would seem there are probably some inconsistencies between specialists to be honest.

I've been tired this week. I've had a few nice days regardless, but have had some rough ones too. My rib pain has eased off a little but my facial pain is twinge-ing a bit, so swings and roundabouts really.

Emotionally I haven't particularly struggled to come to terms with my NMH diagnosis. It feels positive to know that I have it, because it opens up more treatment options.

The 2.5 litre per day fluid intake is really difficult. It's still a struggle every day, but I'm doing it. I'm finding it hard to find foods to put salt on, but I'm trying to have at least 1 high-salt thing per day. Tilt training is really tough- it makes me feel really rough and makes my legs really painful, they shake and my knees threaten to give up, but I'm determined to persevere. My tilt training times seemed to be rising quite significantly early on but they're fluctuating a bit now. Considering my first time was 4 seconds, I'm quite pleased to have broken the 10 minute mark a couple of times in the last few days.

I have no idea whether I should have seen an effect from the increased fluids and salt yet (apart from increased trips to the bathroom); I'm still hopeful that these will help, and am (sort-of) looking forward to my compression tights arriving to see whether they help too. At least I know that there are further options to try if these things fail to improve my symptoms.

Tuesday, 22 July 2014

Tilt test and additional diagnoses: Neurally Mediated Hypotension and Vasovagal Syncope

A while ago I was seen by a consultant who suspected that I had Neurally Mediated Hypotension from my symptoms, but she said a tilt test was needed to confirm the diagnosis. An appointment came through and my mum and I headed off for me to have it done yesterday.

I got called through by my consultant and she explained that I would be wired up to monitoring equipment and we would see how things went- I would be stood up for 20minutes and then if I felt able to be stood longer I would be given a spray of GTN (to dilate blood vessels) and then stood for a further 15-20minutes. She asked whether I thought I'd manage the full 40minutes and whether I was happy to go ahead with the test- I said that I would see how things went, I couldn't predict how I would cope with it, but that I was happy to give it a try.

They pulled the curtains round and I lay on the tilt table, which just looked like a bed with a platform at the bottom. My feet were against the platform ready to be stood up. I was wired up to an ECG machine (just 4 leads) and blood pressure monitoring equipment by a lovely nurse. I was then strapped to the bed and a table was put across to rest my arm on once standing.

The nurse said to let her know if anything was digging in or if I was getting pain both because they wanted me to be as comfortable as possible and because pain would decrease the likelihood of the test working because it would cause my blood pressure to increase. She also said that I should let her know if I was experiencing any symptoms and that we wouldn't be able to chat once I was upright because me talking could affect the readings and it could also distract her and she needed to be watching the screen.

They then started monitoring with me lying down. There was some difficulty getting readings on one of the pieces of equipment (because I have poor circulation and cold hands) to start with, but once they were getting reliable readings on the monitor, they stood me up.

It's a peculiar sensation, because you're sort-of standing but you're supported by the bed and the straps. You're almost, but not completely, upright. I felt some symptoms to start with, my heart was pounding and I felt quite light-headed, nauseous and hot-and-cold-prickly, but then things eased off and waxed and waned.  The nurse checked with me that the straps and everything were ok. Once stood up I found it quite difficult to speak and could feel increasing pressure (presumably blood pooling) in my feet and legs. The nurse watched the screen intently throughout and made occasional notes and my consultant popped her head in a few times to check everything was going ok.

20 minutes arrived and the nurse said that she'd give me a spray of GTN under my tongue. She explained that it might feel uncomfortable in the base of my mouth, might make my heart race and there was a 1 in 20 chance of it causing a headache. She explained that it's only in the blood system for about 10 minutes, so it wouldn't have long-lasting effects. I agreed to go ahead and she said it didn't taste very nice and she was right. It's a very strong taste that sort of takes your breath away.. I can't really describe it, but it's not nice.

The nurse said not to be disheartened if we didn't get a positive result this time and that it's difficult to try to get the blood pressure to drop when it's not what it wants to do. But then she asked me a knowing 'are you starting to get an increase in symptoms now?'. I had been feeling pretty rough but wondered why she asked.... And then I knew. She had said previously that she'd probably see my blood pressure dropping before I felt myself going- she was right. Soon all I could manage was a few grunts in agreement that I wasn't feeling well, I'm fairly sure an alarm of some sort went off (though it could have been a tinnitus-type noise), and then I was out.

Passing out is a fairly indescribable feeling, but very familiar to me. The heat and cold washes over me, I feel ridiculously nauseous and acutely unwell and then I normally lose my sight and/or my ability to speak before losing consciousness.

The next thing I knew, I was coming round from a dream that I cannot recall, but remember was strange, to find about 4 people (including my consultant and the nurse) stood over me. I remember someone saying "Jessica, you're in the hospital", a feeling of confused panic, followed by some vague recollection of what was happening. I remember my consultant saying to wiggle my feet around to help me come round quicker, and someone else advising me to move my legs like I was on a bicycle; I remember just trying to work out where my legs were- I twitched around a bit (completely uncontrolled) and they seemed satisfied. I remember someone saying they would put a cold cloth on my head, and then being taken by surprise because I hadn't processed the words yet. I remember feeling totally disorientated and confused. I was offered a drink of water and caught the straw in my mouth but it took me a few seconds to work out how to suck and then a few more to work out how to swallow lying down. I was asked whether I had someone with me and their name, and just about managed to force out some one-syllable answers, but it was hard. I was still just trying to come round.

My mum was brought in to sit with me and I was still wide-eyed and fairly unresponsive, but was getting there. I had some more water which I managed better. I noticed for the first time that I was no longer strapped to the bed, the table for my arms was gone and my legs were raised on a big cushion- all changes made while I was totally out-of-it.

The nurse and my mum chatted briefly while I came round a bit more, and apparently I had looked like a rabbit in the headlights. I have a habit of fainting with my eyes open, it's apparently a bit freaky, but I don't have much choice in the matter.

The consultant came in and said that my blood pressure dropped dramatically which caused me to lose consciousness (and we were shown the traces). She said she was confident that I have Neurally Mediated Hypotension and resultant Vasovagal Syncope (fainting). She said that I'm getting blood pooling in my legs when I'm upright which is causing too little blood to get to my brain, heart and muscles which results in light-headedness and fainting, but is also probably a contributory factor to my fatigue, nausea and other symptoms.

I've been advised to squash the blood out of my muscles before standing up (eg. By crossing my legs), drink 2.5 litres of non-caffeinated fluid per day, increase salt intake, wear compression tights and do tilt training (stand 15cm away from a wall and lean against it until symptoms arise twice every day- the amount of time should increase with time).

None of this is going to exactly be easy, but if it helps to improve my symptoms then it will be totally worth it. There is no cure for Neurally Mediated Hypotension but there is symptomatic treatment. If the above methods don't work, I can be given medications, but they don't fix the underlying problem, they increase the blood pressure so that it drops from a greater level and therefore hopefully doesn't then drop low enough to cause symptoms.

After discussing with the consultant (which basically involved gentle grunts from me in what seemed like the right places- I was still pretty out-of-it), I was disconnected from all the monitoring equipment and started working towards sitting up, managed to get onto my scooter and left once I felt safe to sit up and scoot home.

I got something sugary to eat and a big drink in the hospital cafe and recovered quite well. I was extra-tired and needed to be flat a lot of the rest of the day but didn't feel too bad.

NMH is a form of dysautonomia, which means I've got a problem with my autonomic nervous system which controls everything that happens in the body automatically. The signals between my brain and my heart aren't working correctly.

It hasn't come as a huge surprise but you get so used to things coming back 'normal' with CFS, and you get so used to things being not only incurable but also untreatable, that I almost didn't dare believe someone would find an often-treatable problem that they think could be a significant contributory factor to my condition. I don't think I can come round to the idea that any new diagnosis is exactly 'good' but it sort of is this time because it's something major but potentially treatable, and treatable is most definitely good!!

PS I have had other appointments that I haven't updated about yet, but I will do. They went fine and there were no other new diagnoses, just advice. My main consultant did say he was happy for me to return to Uni for a few hours per week in September though which is exciting. Will explain more soon.


Thursday, 3 July 2014

03/07/14 update: health, Uni, medical leave

It's July. Already?! Eek. Where on earth did June, May, April, March and February go?! Wah! It would seem time in fact flies regardless of whether you are having fun..

I'm heading to my university city for a whole week soon to see a few doctors and sort out prescriptions and have my asthma review.. All exciting stuff. It'll be nice to see some friends who are still there though (some won't be around which is a shame). I'm not quite sure how I'm going to manage everything I've got planned, alongside serious challenges including getting washed and dressed, but I'll give it a go. What's the worst that can happen?! Ok, don't answer that actually..

How have things been since I last properly updated? Well, much the same really. I'm struggling to varying degrees with things I wish I still took for granted. I have been out and about a few times and have seen a friend though which has been nice.

My sleep schedule is still rather.. unique. I recently had to fill in a sleep diary for hospital which basically showed that my sleep is a mess (my analysis, not theirs). On average I got less than 6 and a half hours of sleep (range from 2hrs45 to 9hrs20) and it took an average of 200 mins (3hrs20) to fall asleep after lights out (range 2 hours to 5 hours 10 minutes). Yeah. Normally I sleep from about 2 until about 10, but it varies a lot.

Pain. Well, it hurts. I went to the cinema recently to see A Fault In Our Stars (good film, but tears are inevitable) and I remember them quoting 'pain demands to be felt'. So very true. 50mg Tramadol is now about as effective as swallowing a smartie and hoping it will help. My pregabalin (Lyrica) dose has now been increased to 600mg total per day.. The maximum dose. I'm not totally sure this is safe long-term as I'm only relatively light (and several doctors have pointed out to me that dosages should really be dependent on weight). It seems to be helping to some extent thankfully, but my pain levels are far from ideal. My ribs have been agony in particular- they never used to give me much grief, but the last few months my ribs have given me more grief than most other body parts.

On the subject of only being little, I'm significantly less little than I was- yay! I'm still about half a stone lighter than I was when I was well but I'm quite happy with how things are going. My weight is creeping up nicely. My ribs are still horribly bony yet my tummy is big and swollen (ok, partly IBS-related)- typical- you really should get to choose where the weight goes!

On a closely-related matter, my nausea is still ok. Not going to talk about this any further incase I jinx things ;)

Fatigue is still a nightmare. I still have to lie down a lot. Doing anything vaguely physical is pretty much a no-go. I can go out on my mobility scooter for a day (well, a few hours) and I'll be shattered but I can manage that ok (not every day, but some days). Bathing/showering and dressing and washing my hair (the absolute worst!) are much, much more of a challenge.

Walking is a real challenge. My balance seems even worse than it was..

My mood is variable, but it's been ok. The pain levels have been difficult to endure at times and that wears me down. I've also been stressing a bit at the idea of starting back at Uni, because things are far from how I'd hoped they'd be at this point, but it's exciting to think I'll hopefully be back with my friends and doing what I want to do. The lack of progress is frustrating. Going weeks at a time without seeing anyone your own age is strange. Relying on others and losing any sense of purpose is soul-destroying. But mostly I muddle along ok, and stay relatively happy. I enjoy the little things, and they keep me going.

My brain feels very mushy and I get mentally fatigued as well as physically which is frustrating. I can't always manage (and when I can, I often forget) to reply to long messages (sorry everyone currently waiting for replies) and I can't always manage to update my blog which is why posts are sometimes rather infrequent. This is a bit of a concern considering I'm hoping to return to university in September. I also get stuck on sounds sometimes (sss, lll, rrr, www) and can't remember specific words when I'm talking which is really annoying.

It's become clear to me that Interruption of studies/Medical leave(/being stuck at home chronically ill for any reason) is far from the 'easy option'. The challenges while struggling at Uni are different to those while on medical leave, but neither circumstance is an easier experience than the other. I dream of being back at Uni, but I dream of being back AND well- I don't miss the constant administrative nightmare of juggling everything medical with studying, I don't miss trying to do pieces of work or revision through flares, I don't miss never knowing how I was going to drag myself through the next day, I don't miss trying to get my screaming body through to the end of the week and spending the weekends recovering enough to face the same onslaught the next week. When I was struggling at Uni time off certainly appealed, but I definitely didn't hope for this reality- time out from Uni, with little you are able to do, too ill to go out regularly, and few friends around to visit, is isolating, depressing, mind-numbing and incredibly frustrating; nobody would 'wish they got to lie around all day like me' if they took into consideration the amount of pain I'm in, the lack of choice I have in the matter, the fact most daily tasks are a huge challenge or impossible for me most days or how horribly ill I constantly feel. When I was at Uni I wanted a holiday- but from Uni AND my illness, primarily the latter. Basically, I just want rid of this illness, then even the holiday wouldn't be necessary, although it would still be nice!

I had no choice in swapping from struggling at Uni to going on medical leave because I was too ill to stay studying, but I have a choice (to some extent) about swapping back and I still want to try and study again, despite the challenges. I'm going in with my eyes wide open- I know it's going to be hard- but it'll be worth it. I can't do the job I want without getting through my course first, so although it would be great to enjoy every second of my course, right now just getting through it is the aim. I love my course, and I just hope it doesn't feel like an ordeal this time round. I'm not a lot better than I was when I left, but I want to give it a try. I'm paying rent anyway, so I may as well try and live there! I won't do anything stupid though, there's lots that needs to be taken into consideration. If I don't feel able to meet the demands of my course, or my condition relapses, I will have to retreat.

This is all presuming I get the go-ahead from my consultant to resume my studies.. I think it's going to be a close call to be honest. I could obviously influence the decision hugely if I wanted to, but I want him to be able to make an accurate assessment of the situation and advise me accordingly. Balancing my health and my ambition isn't easy, so in a way I'd like someone else to be making the decision.

Going back would risk aggravating things, and could possibly trigger a further decline in my condition. I'm not sure I feel able to cope with an even greater level of illness and disability. Obviously that would be worst case scenario but it's perfectly possible..

Living with a chronic illness seems to involve constantly walking fine lines. It's often hard to know what to do and actions always have consequences. You can't always prioritise health, because you could end up mollycoddling your failing health and getting nowhere in life. Sometimes pushing boundaries to some extent is a positive thing. Pushing them too far, however, risks disaster. You do have to know when to step away but at some point you have to try dipping your toe back in the water again, but knowing when it's safe to do so isn't always easy.


Friday, 13 June 2014

Visibly disabled- one year on

I haven't really spoken about the more 'visible' side of my disability since shortly after I got Poppy, my mobility scooter, and as that was now a year ago, I thought I'd share some thoughts and observations.

It has been strange to identify myself as disabled and no longer shy away from it. I've lost a lot of mobility and my condition has a huge effect on my life. It is hugely debilitating and walking is a challenge, so yes, I am disabled. It's just my reality. Hearing other people describe me as disabled took a bit of getting used to, but it's just a truth.

Going down the street people often walk in a huge arc around me as though I'm either contagious or have no control over where I'm going. I'm actually quite adept at driving my scooter, I don't regularly run people over, so there is no need to give me quite so much leeway. Give me personal space, yes, but I won't lash out at you, you won't catch my disability and I'm unlikely to run your toes over, so giving me quite such a wide berth is unnecessary.

People stare. A lot. You get used to it to the extent where most of the time you barely notice it, but it's strange for people who aren't used to being with me, or haven't been with me for a while. I'm afraid the stares now come as a compulsory additional extra. Maybe I should give a pre-trip reassurance to friends that they aren't wearing something hideous and they don't have anything smeared across their faces.

Children find me, well.. Poppy, fascinating. They stare and ask questions and it embarrasses their parents. It's quite amusing to watch the familiar scene unfold. The parent normally looks horrified, looks at me to judge my reaction and then hurries off out of my earshot before replying. My favourite of these encounters went like this: Child "Why's she on one of those?", Parent "because it's fun" *smiles and winks at me*- it's nice when people can still show a sense of humour rather than freaking out about it being a sensitive topic! I'd hope that parents sometimes take the opportunity to explain a bit about disability/differences (and that they're normal and nothing to be put off by) to their kids though. I really don't mind children staring, they don't know better. I admit it hurts slightly when they stare at you as though you're from another planet the whole way down the street, head turned in the exact opposite direction to the direction of travel, but I know I look different sat on my scooter, although I would argue they look pretty strange walking looking the opposite direction too, so y'know...

The people that totally avoid eye contact are quite common. They're so conscious of not wanting to stare that the normal level of natural eye contact is lost. I understand. I've probably purposely looked the other way to not seem to be staring, but it's a strange experience when people glance at you and then abnormally quickly look away and don't look back even vaguely in your direction. I definitely prefer the can't-bare-to-look-people to the hard-core-stare-people who literally don't even look away when you look them straight in the eye and raise your eyebrows though. I had one of these when waiting for a train once- she spent at least 15 minutes staring intently at my scooter- it was seriously awkward; I tried the staring back, raising eyebrows, the polite cough to draw attention to the fact I was alive and had a face, but all to no avail- her eyes did not raise from my body and the scooter on which I was sat.

It's frustrating when people stop dead in front of me with no recognition of the fact that I can't stop dead on wheels like people on legs can. Poppy's brakes aren't great and even if I put my feet down, I can't stop instantaneously. It's a nightmare. If people don't realise I'm there, or someone stops suddenly in front of them, it's just one of those things, that's fine, it's when they're well aware I'm there and then they stop dead without warning that it bothers me. Oh and then you get the people who are so stunned by your presence that they stand directly in front of you, staring at you, which means you have to manoeuvre round them, or smile and say 'sorry, can I just squeeze past?'- their response is normally to shake their own head back to life (you know- when people shake their head erratically with their eyes closed and then open them wide- I assume it's like jump starting your car, who knows..?!) and then apologise emphatically. It's often a panicked 'I don't know where to go to get out the way- so I'll just freeze' situation, in which case the intentions are good at least!

People who talk to you as though you're stupid are probably the most frustrating. My legs might be rubbish, and yes at times my speech isn't 100% perfect and I have abstract challenges with thinking, but I'm far from stupid. Speak to me the same as you would any other intelligent human being, I didn't use my brain in part exchange to get my scooter. I have a medical condition affecting my mobility, not a learning disability. I had an eye test at the same time as my mum one time, and a lady came across and asked mum whether she needed to be in with me. I hadn't been using my scooter long so her ignorance came as a bit of a shock!

One piece of advice: speak to me about my access requirements, not whoever is with me. They might not even know what I feel capable of that day and I'm more than capable of speaking for myself! I don't like being referred to in the third person when I'm there: hearing 'Can she..' or 'Does she..' is maddening and frustrating. Assume the disabled person is capable of understanding and answering until proven otherwise, not the other way round.

People rush to be over-helpful, are over-polite and leap out my way. Don't get me wrong- I appreciate it when people open doors for me because they are there at the same time as me. I just find it a little odd when someone runs across a room and leaps to my rescue by opening a door for me as though I would never have been able to get in otherwise. I can open (most) doors. Maybe not as slickly as people on legs, but when I was at Uni I regularly got through multiple doorways unaided every day. Gasp! Wow. Well done me! This group of people are by far the most innocuous and least annoying- it's just that being helped by random strangers feels a bit odd. The most peculiar random offer from a stranger was at the train station once- I was sat on my scooter and a (drunk) man asked whether I wanted a 'lift' onto the train- how he was planning on carrying me + scooter up the steps, I don't know (particularly given his inebriated state), and how he had missed the fact I had station staff with ramps stood with me, I really don't know.. It gave me (and his equally drunk friends) a laugh though!

I end up saying sorry a lot. I apologise every time I have to ask someone to move because I'm too wide to fit past them. I apologise every time I end up in someone's way because my scooter is blocking the aisle. I say sorry every time I need to do something differently. I apologise every time my disability inconveniences others. Yet it's not my fault that I'm disabled. It's not my fault that I need my scooter and the floorspace it requires is greater than the average human. If I just rode over people's feet when they're in the way it would save me a lot of time and 'sorry's, but I'm not sure people would like it...

You realise a lot of places are still very inaccessible when you're on wheels! Some places I can't get into. Other places I can only get into because I can still walk a little and my scooter can be lifted. You realise how inaccessible a lot of places must be to full-time wheelchair users; I'm lucky in that I can get up and walk a few steps, they'd have to be carried. Also, lifts break far more than I previously realised.

Cobblestones.. Nightmare. Enough said.

People give me sympathetic, pitying looks. They have no idea what my reality is. I know people mean well, but it's totally out of context- they don't know my name or my condition, they've never spoken to me. It's just a bit weird.

I spend a lot of time online and I find some of the disability-related things I see strange. There's an image that goes around that says 'the only disability in life is a bad attitude'.. Hmm, tell that to a full-time wheelchair user facing a flight of stairs- no amount of positive thinking will get them up them. Tell that to someone bed-bound due to a severe chronic illness in intractable pain- are all the same opportunities and experiences available to them. Some aspects of disabilities can be overcome, but disabilities are disabling- that's the whole point- a positive good attitude won't change that. A lady called Stella mentions this in this fantastic talk: http://on.ted.com/b0F6N.
Another is an image that says 'back in my day wheelchairs were for disabled people, not fat people'. Many disabled people are overweight due to medications or mobility impairment- how do you know that person isn't disabled? I feel fortunate that I'm underweight because I face far less judgement as a result, but that's wrong.
The last one I want to mention is an image of someone standing up from a wheelchair and it's branded a 'miracle', as though the wheelchair wasn't necessary. A lot of disabled people can stand and walk a little, myself included, if doesn't mean we're not severely disabled and in need of the mobility equipment!


The strangest thing is how much things changed with a small progression in my illness. When I was desperately struggling trying to get around on my failing legs, in agony and severely lacking in energy, nobody could see that I was ill.. Strangers wouldn't have dreamt of offering help, I would never be offered a seat on public transport (in fact I used to get 'the look' suggesting I should leap up to offer my seat to very able-looking people just because I was the youngest person around), people would sigh at me and push past me because I was walking slowly, people would bump into me oblivious of the fact it caused me pain- the world seemed like a harsh place. I could have done with some sympathetic smiles and a few offers of help back then, but my plight was invisible.

Before I was visibly ill, I was primarily seen as a young person. It seemed to be a label that turned people away. People don't talk to young people. Now that I'm primarily seen as a disabled person, people seem much more keen to chat to me in situations where I would have previously been ignored.

I like it when strangers get chatting to me and my disability isn't even mentioned. I like it when people compliment my scooter- I think she's pretty cool too. I love it when people offer to help, wait for a reply, and act on said reply. I like it when people talk to me and treat me like an ordinary human being. My mobility impairment is there for you to see, but just because you know my legs aren't 100% doesn't mean you know about me- talk to me, get to know me, don't judge me by my disability.


Thursday, 12 June 2014

Pain flare

My pain is flaring recently. I am in pain head-to-toe. Literally. Normally I'd leave it at that, but I decided that I'd distract myself from the pain I'm currently experiencing by describing each sensation. And then I decided I'd post it as it may be of interest to some.

My scalp is ridiculously sensitive to the extent that brushing my hair causes pain.

My facial pain has been horrible recently. It's been affecting the left hand side of my jaw and making one of my teeth hurt like hell. I've been getting sharp stabbing pains in my forehead more frequently that make me gasp in pain. I get aching across my cheeks and in my forehead as though I have sinusitis, even though my sinuses are clear.

I've got really bad rib pain. My ribs are tender and at times I get crushing pains in the centre of my chest and also stabbing pains either side, as though someone is twisting a knife wedged between my ribs.

My back keeps going into spasm causing me to freeze in absolute agony. The pain absolutely takes my breath away.

My abdominal pain is a constant battle. The pain is just so severe. I don't know what to pass off as 'normal' (for someone with IBS and CFS) or whether any of the pain is panic-worthy. I end up doubled-up in pain at times.

My shoulders keep feeling out of place and painful.

My arms feel heavy and exhausted, weak and painful. Holding my arms up against gravity causes deep, ever-increasing discomfort.

My left wrist is agony if I try to push myself up using my left hand at the moment, which is a bit of a nightmare because that leaves one wrist taking all the strain until it improves..

My hands really hurt. The muscles, the joints, the nerves.. Everything. Even typing on my phone at times is too painful for me to bare.

My hips and knees are causing me a lot of pain. It's hard to find a comfortable position to sit or lie in.

My thighs ache endlessly, as though I've run a marathon.

My feet, ankles and lower legs hurt from using the wrong muscles due to disordered walking.

It's been difficult to tolerate.

It's so challenging because I've been having to take a lot more painkillers over the last week or so, but that makes me feel worse, both because of side effects and just feeling dependent on them and unable to cope alone.

Plus, they're not working. They don't get the pain down to a bearable level. My pain is totally out of control. I need to go back to the doctors, but I'm reticent to increase doses by much or try anything stronger. I don't think I have much choice though in all honesty. I can't live with my pain as it is long-term.

Dealing with pain is both physically and emotionally draining. It's hard to tolerate and cope with. But I just have to get through hour-by-hour and day-by-day until the pain eases. Although I'm suffering tonight, yesterday was a better day, so I'm hoping I'm over the worst of this flare!