Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘health’

Mental Health & Chronic Illness

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

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A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

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5 Years On

I can’t believe we’ve reached 5 years since my battle with my Dystonia Alien began.  I wouldn’t say time has flown by but I have certainly survived far better than I had anticipated at the start. In the beginning I struggled to picture a day ahead yet alone 5 years down the line. I was by no means depressed I just couldn’t imagine living with this condition for any length of time. Each hour was filled with pain, each month was taken up with ambulance after ambulance trip to the local resus department. If you had told me in 2012 that in 5 years time I would be typing this sitting next to my partner in our flat with a new baby I would have scoffed. It didn’t seem like a life I would ever be able to have.

Looking back on the first year of Dystonia I find myself thankful that even though I still have my spasms, my wonderful neurologist has found a combination of injections and medications that work for me. Life is in no way easy, pain is still a rather constant companion, but I have far more control over my limbs than I ever expected to have.

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My bad days, pictured above, are thankfully better controlled

I’m happy to say I no longer struggle to imagine the next day or year coming, nor do I dread the coming days anymore. Now I find myself excitedly looking forward and making plans for life post university, writing my next book and jumping without worry at any opportunity  presented to me. I acknowledge that I’m always going to have my struggles, but with multiple health conditions that’s to be expected. Despite, and because of my Dystonia, my days are filled with laughter and joy. What more could I want

It’s amazing  I don’t rattle, but all these pills keeping me ticking along.

Hard Decisions; Hello Meds

Today I reluctantly restarted several of my medications. This was quiet an emotional decision to make as for the last almost 7 weeks I had fought to preserve with breastfeeding; despite the hospital wanting to give him formula from the moment he was born. But I can’t deny that there has been a slight increase in my jaw and eye spasms, and it makes sense to hit this on the head now.

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We had finally conquered breastfeeding

I know I have done well to get this far, but I still feel rather sad that we are now moving on, especially as over the last two weeks we had really got breastfeeding down to a much calmer event. The down side to having rare conditions is that not everyone who is involved with different aspects of my care has an in-depth understanding of just how my conditions affect me, despite my best efforts to inform them as best as I can. If people don’t want to familiarise themselves with the conditions there is not a lot that can be done about this. This sadly has meant that after a very short, under a minute-long eye spasm which I spoke through, a professional who witnessed the spasm presumed I had had a seizure (but didn’t think to discuss this with me) and contacted another member of my medical team causing a day of unnecessary drama and stress. Whilst this has all been cleared up now, I feel that this has left me with very little choice but to take my medicine again so I can prove I’m doing everything I can to prevent this my spasms.

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I had a long chat with my GP yesterday as the whole thing left me feeling rather needlessly judged, after all people with epilepsy have children, as do people who are permentalty blind. Thankfully she is very familiar with all of my conditions, and although she would rather I continued to breastfeed she understood why I felt there was little other choice in the matter.

My botox appointment has come through for august so I’m looking forward to talking through my future treatment plan with my neurologist.

Diagnosing Dystonia

Reaching a point of diagnosis in too many cases is a long and hard road to travel down. Despite being the third most common movement disorder there is an astounding lack of knowledge in the medical community. The lucky minority may get a diagnosis in months, but for most it takes years, sometimes decades.

In a way I was lucky that I had heard the word Dystonia once before, though I had no appreciation of its signifinance. Looking back at my medical history I had symptoms long before I realised there was anything potentially wrong. In 2008/2009 I developed severe neck spasms, however this kicked off after a rather spectacular fall from a horse which resulted in me landing on my head, so it was easy to put the spasms down to this. Then in 2010 I experienced for the first time Oromandibular Dystonia. My jaw dramatically deviated for a painful 3 months before we found a maxiofacial consultant surgeon who knew what was wrong.  I was informed that a quick operation where my tempromandibular joint (TMJ) would be washed out and botox administered would solve the problem. I never questioned this and presumed that Dystonia must be some sort of infection. This belief was reaffirmed by the fact that the operation was a success. Shortly after this  I developed arm and back spasms, but for several years I shook these off as simply violent shivers.

In the summer of 2012 I was coming to an end of my first year of midwifery training. For a couple of days I’d had ear ache and swelling and had planned to visit the GP but was in no rush to do so. I now recognise this as a sign of whenever my jaw is going to play up. That weekend I’d popped home to visit my family,  whilst relaxing in the garden with them my jaw started to spasm and once again deviate. My mum offered to drive me to the local hospital which I declined, convinced it was just an infection.

My GP that Monday was horrified. After one look at me I was on the way to the hospital with her convinced I had had a stroke. Countless blood tests and xrays were taken, and eventually a consultant appeared. He was the top bod in his area and had an ego to match. Due to his station I didn’t question his plan to wire my jaw shut. Less than 24 hours after the operation my flatmates were rushing my back to hospital, the spasms had returned with vengeance, breaking every wire in my mouth and dislocating my jaw. From that moment onwards the consultant dodged me. Refusing to see me or remove the wires which were ripping my mouth apart.

It took a further 3 months to find a surgeon willing and able to help me. Sitting in front of the surgeon who had treated me back in 2010 he was apologetic for the state I was in. By this point we had started researching Dystonia as I was now wheelchair bound and unable to brush my hair or feed myself.  

I often wonder whether 5 years on I would have received my diagnosis if I had never met my neuro. The Dystonia Society UK have a wealth of information that has been invaluable. It’s enabled me to ask for treatment and referrals appropriate for my conditions and have informed conversations with doctors. 

I never expected to still be fighting for correct care. The current hospital I am in would far rather blame my symptoms on past traumas than acknowledge the existence of Dystona. It makes me thankful daily that I have a neurologist willing to my corner.

Rare Disease Day 2017

Today is Rare Disease/Disorder Day 2017; it’s focusing on bringing much needed attention to complex conditions that are sorely in need of more research. I’m not going to to go into much detail about each of my individual conditions as each of their awareness weeks are just around the corner, what I’d like to discuss instead is my experience of day to day life when you have a rare condition.

Living/Mobility aids

When you read the words mobility aids I’m going to bet that the majority of you instantly conjured up an image of a wheelchair, crutch or walking stick. You’re not wrong all three of these are part of my day to day life depending on the condition of my body that day; and just because I perhaps didn’t need a wheelchair first thing that morning, doesn’t guarantee I won’t be completely reliant on it an hour later. In my daily life I have to use compression gloves, splints for my thumbs, wrists, arms and knees, neck brace and ankle stabiliser to try and keep my body in a somewhat functioning capacity. Now that doesn’t mean that I wear them all 24/7, but at any given time I’ll have the majority of them on.

 

A selection of my day to day living aids

Medication

I’ve had to come off the majority of my medication due to pregnancy, but I’ll admit I’m counting down to being able to have my botox injections and anti-inflammatory meds again. Just 5 minutes standing at the moment is enough for my feet, ankles and knees to swell up like balloons and takes a good hour to go back down. If my body is really playing up then just standing up wrong results in a knee slipping out of place. Between the spasms, the subluxations/dislocations and seizures, medication has become a vital part of my everyday routine. This involves being aware of when in the day I have taken them, remembering which ones it’s important to eat beforehand with and which ones I need to avoiding eating before taking, it involves planning in advance to make sure I never go out without my medication on me plus bringing along some spares because you never know just what may happen.

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A selection of the medications and supplements I’m reliant on

Disbelief

It’s been almost 5 years and I’m still not used to the looks and comments I receive. I’ve heard it all, that if I drink enough green tea, lose weight and seek therapy then I’ll be cured. People don’t seem to realise that every suggestion they can throw at me I’ve most likely tried, and that living with a chronic rare condition isn’t like getting over a bad cold. My brain literally doesn’t work in the manner it should, my genetic makeup is faulty which has resulted in a connective tissue disorder that will only get worse, and don’t even get me started on having a treatable chronic infection that the NHS won’t treat as A) They don’t like to admit that Chronic Lyme Disease exists and B) They’ll treat me if I get a positive lumbar puncture but because I have a movement disorder I can’t have a lumbar puncture. Honestly it’s all a bit of a joke.

It can be difficult dealing with general society and medical professionals refusing to accept your explanations. To a degree I don’t blame them, half of my symptoms are crazy and, as they are rare, people aren’t familiar with them and like to brush them under the rug. But doing that doesn’t make it any better, the symptoms don’t magically resolve themselves, if anything they get worse as I’m not receiving the treatment I need.

My Health Varies From Minute to Minute

There’s not much rhyme or reason to my symptoms, which makes it hard to predict what to expect and when, which in turn makes it difficult to manage. One day I may be perfectly capable of getting up, dressed, and having a generally active day. The following morning  I may wake up unable to even roll over in bed. The unpredictable nature means planning in advance is key but also difficult. More often than not plans are cancelled at the last minute due to ill health.

The Reality of Knowing I’ll Never Get Better

This is something that I’ve known since 2012, but with every new diagnosis of yet another rare condition that cannot be cured it gets harder to deal with. I find it hard to picture anything ahead of time simply because I know these illnesses aren’t going anywhere, that pain is always going to be a prominent feature in my life. How do you cope with knowing that? It’s been 5 years and I’m still working on acceptance. What I find hardest is when people say in a well meaning manner “I hope you get better soon”. It’s an automatic social nicety but it brings out the jealous monster in me. I want to be well more than anything, it’s just not a reality for me, and knowing that the one condition I live with that can be cured is unlikely to ever be sufficiently treated due to sheer stupidity inflicted on sufferers by NICE guidelines, well that just takes the biscuit.0bfcffe9889954c60563525d5c66d5c0

Ignorant Drs

When you’re chronically ill you rather quickly get a feeling for the attitudes/how well informed the Drs in charge of you are on your conditions. IF you’re lucky you get a wonderful open minded Dr who takes the time to listen to you, my neurologist is a perfect example of this and has always fought for me. However, and sadly it seems more frequently, you come across Drs who are either simply not up to date (with everything they have to know this is understandable), or they just seem to enjoy being ignorant on the matter.

In 2012 I was admitted with worsening Dystonia to a nearby hospital, during my inpatient stay I developed pain triggered non-epileptic seizures. They completely dismissed my Dystonia and told me that it and my seizures were completely psychogenic and that the only treatment I would benefit from would be psychotherapy and that the seizures could not cause me any harm. This diagnosis was based on the fact that in my early teens I’d been physically abused, it didn’t matter in their eyes that I had sought years of counselling, and had put that section of my life far behind me. Months later I met my wonderful neurologist who confirmed my original diagnosis of Dystonia and informed me that my seizures had absolutely nothing to do with my past, but were caused by my body’s inability to cope with the significant levels of pain that I experience.

I have over the last few years been told repeatedly that my seizures cannot cause me any harm. It’s always fun to point out to the Dr at this point that this isn’t true when it happens on the stairs, or from standing, or crossing a road…the list is endless. In recent months, my POTS & EDS consultant has queried whether my seizures are in fact related to my POTS and autonomic dysfunction, but again this falls on deaf ears amongst my current local Drs.

It’s coming up to 5 years since my first run in with this particular hospital and their attitudes have not changed in the slightest. Last night I was taken by ambulance to hospital after having a seizure, I collapsed from standing and gave my head a rather good whack on the loo as I fell. Normally I wouldn’t go to hospital straight away for this, but due to hitting my head and being pregnant the hospital advised me to call an ambulance. This turned out to be a good call as halfway there I had another seizure which negatively impacted my breathing.

I’ve spent a lot of time in and out of the hospital recently due to my faulty body, so have got to know the staff in the wards relevant to me quite well. This also means I now dread every single visit. When the Dr came this morning for the ward round I felt like holding a hand up and saying chill I’ll leave now. He leaves me doubting my own sanity each time. However, I held my tongue and heard him out, just in case he’d actually done some research over night; he had not. Instead he gave me the usual lecture and then threw in that after discussing my case with a consultant, that has never met me before, they were going to refer me for psychotherapy for my seizures.

I’m beyond angry. At the back of my notes, and I inform the staff of this every time I am admitted, there is a letter from my neurologist explaining my seizures, explaining that it’s not just in my head and as clear as day states I need IV muscle relaxants and painkillers during one, and that there is no psychological deeper issue that needs dealing with. However, it’s become apparent that turning to the back of my notes and reading this letter is a far too complicated process.

Having to go through the same frustrating and time wasting process every single time I visit this hospital is exhausting and frankly disheartening.  I know that I did need to go yesterday and get checked over, but coming up against the same walls over and over again leaves me feeling like I would be better off avoiding this hospital at all costs and I can at least self-treat at home to a degree. It’s sad that 5 years on from my first encounter at this hospital, the same issue has yet to be dealt with.a560572834e8e4ffb7ca4d1e3f2e4337

Functional Paralysis = Quality Floor Time

Pain at the moment is my constant companion. After weeks of agonising, seizure inducing pain, and more hospital visits than I care for, I was informed I’d dislocated two ribs. I normally handle dislocation rather well; if my thumbs have popped out, it’s no big deal, I can pop them back in with ease, my jaw causes a fair bit of pain and in some cases I need help relocating it, but the majority of the time I can manipulate it back into place myself. My ribs however are a completely different story, there’s not a lot that can be done about it. I’ve had several medical professionals try and get them as close to where they should be as possible, a tear-jerking process might I add, and every time within hours they are back out of place. Sometime it’s simply because I twisted too fast or I sneezed or, if I’m a real dare devil, I tried to get out of bed. Everyday basic activities cause enough pain for me to be on regular codeine four times a day, and tramadol if I start seizing. The hospital doesn’t know what to do with me at first, they admitted me to: rule out anything more serious such as gallbladder problems; keep a close eye on the baby (who’s coping miraculously well with my faulty body) and keep me on regular doses of paracetamol, codeine and oramorph. Whilst they thankfully didn’t find anything on the scans that needed surgery, they did notice that both my kidneys are distended which won’t be helping my pain.

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Most days I’m a 6. Currently I’m a 9.

Now I’m back at home and it’s hard to know what to do with myself. There are some brief moments in the day when my pain feels manageable, like earlier today. Foolishly this afternoon, I decided to take advantage of feeling okay and fold some baby whilst clothes sitting on the floor. You would think that this is a job that shouldn’t take too long and isn’t exactly taxing, right? Wrong. The pain quickly got extreme enough, despite codeine, for me to realise if I didn’t lie down flat on the floor asap I was going to risk hurting myself as I knew my ability to stay conscious was fading. Whilst being on the floor was enough to keep me conscious for the majority of the time (I’m pretty sure I had 2 or 3 seizures), it wasn’t enough to stop my brain from going into functional paralysis mode. I spent just over an hour unable to move any part of my body, struggling to get my eyelids to flicker and completely unable to make a sound. I knew I needed help and that my partner was in the next room, but I had zero ways of indicating to him that I was in trouble.

It’s like having your mouth gagged, your eyes taped shut, and your entire body rolled up and bound tightly in a weighted blanket; the entire time even your thought processes become sluggish and it takes effort just to think. There’s so much temptation to just give in to unconsciousness, I can feel it on the horizon, creeping closer and there’s not a lot I can do to keep it at bay. Some days I admit I welcome it; being functionally paralysed terrifies me, I can’t bare being aware of how helpless I am at the moment in time. Other days simply managing to remain conscious feels like the biggest victory I could ever ask for and achieving it is my way of fighting back.

After about an hour on the floor I had regained enough control of my body to make small noises and through the blessing that is voice technology instruct my phone to call my partner. Eventually we got tramadol into me and managed to move me to our bed. I’m exhausted, it sounds bizarre but having your brain cut off from the rest of your body is shattering. I’m now curled up, wrapped in a fluffy blanket, relishing in the slightly duller pain. I’m admittedly scared to even consider moving but the pain killers have enabled me to feel my body and I’m in a safe place which is all I can ask for.

“Just Stay Positive”

I have spent the majority of this week at varying hospital appointments, today is my rest day before heading back to the hospital for more testing tomorrow. Frustration and disappointment has been my main response so far to these visits. Part of this is most likely because I am under the care of several different specialists who are experts in their respective fields and generally wonderful. I’m quite lucky to have them as my doctors. However, every now and then I meet a new Dr and have to fight the same misconceptions and preconceived ideas from scratch; it’s exhausting, emotionally draining and depressing.

I’m quite good at finding the positives in being chronically ill,  I’ve been known to be in agony, hospitalised with spasms and dislocations and still be giggling away at whatever ridiculous manifestation my symptoms have appeared in this time. That being said I’m aware of how important it is to be completely honest with my care providers about how I’m managing and asking for help when I need it.

I had been counting down to yesterday’s appointment to see the local obstetric consultant as I am really at a loss with what to do to help myself. The advice so far has been plenty of bed rest and to use my wheelchair if I have to go out. This makes sense and I’ll admit I was unreasonable hoping the Dr yesterday would wave a magic wand, but university restarts at the end of the month, my fingers dislocate when I push myself and I’m pretty sure turning up to uni doesn’t count as bed rest. So I sat in front of the consultant asking if there was anything, even the smallest suggestion, that he could think of to help me help myself. “Just stay positive” was his advice. It was also the last thing I wanted to hear. 5 minutes later he admitted he didn’t have a clue about any of my conditions, so I walked him through them briefly. His advice changed to just come to hospital every time you have a fainting episode so we’re aware of you; my episodes are at the moment generally occurring over 10-20 times a day, so I’ll just move in shall I?587860e5ecea791e83ab995d35b2d52a

This whole appointment got me thinking about my array of conditions, which are confusing and do overlap, so for those of you who are curious here’s a brief introduction.

  1. Generalised Dystonia – this trickly little brain alien causes painful and often debilitating spasms in my eyes, jaw, neck, left arm and torso. It’s not curable, and every patient presents slightly differently. It’s currently playing up as I’m off treatment for the rest of my pregnancy.

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2) Ehlers Danlos Syndrome Type 3 – Unlike my Dystonia, unless I have dislocated or subluxed you cannot tell I have this condition. It causes fatigue, brain fog, pain, dislocations, allergies amongst many other symptoms.

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3) Postural Orthostatic Tachycardia Syndrome and Dysautonomia- This is a relatively new diagnosis for me. Currently this means I can’t even sit up without my heart rate shooting through the roof and my blood pressure plummeting. It’s pretty bad at the moment, due to blood pooling when I eat I pass out during meals. I also pass out if I get too hot, move too quickly etc. My autonomic nervous system is basically a bit temperamental and therefore many different automatic functions can malfunction.

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4) Non Epileptic Seizures – Previously my care providers thought these were pain related but now they think my PoTS may have something to do with it. Often Drs misunderstand these seizures and presume they are either psychogenic or part of drug seeking behaviour.nes.jpg 5) Endometriosis – I fought for years to have this investigated, constantly being told that it was simply bad period pains.  Many drs ignored the fact that they were every 2 weeks, extremely painful, and very heavy. By the time a diagnostic laparoscopy and treatment was carried out extensive damage had been done and I was told that my chances of unassisted conception were very low. This make me all the more grateful for our little miracle.

6) Chronic Lyme Disease – Lyme Disease is a bacterial infection that if caught early can be treated easily. When it becomes chronic, like in my case, it is extremely hard to cure. It affects multiple systems and therefore is frequently misdiagnosed.

So This Is Happening…

So, this is happening…Due May 2017.

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As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.

Celebrating The Fabulous in Spoonie Life

I cannot believe how quickly this year has flown by, it feels like just the other month I was curled up writing my usual Happy Christmas blog post. Looking back at my blog posts from the last year it has been a rather hectic emotional roller-coaster. My blog was set up to raise awareness in 2012, but rather accidentally for me it developed into a rather useful therapeutic outlet. For you guys that means whilst I do post the happy stuff, the negative is slightly more frequent. This is simply because life is unpredictable and the good, bad and the ugly don’t come in equal measures.

So to help end the year on a positive spin here are just a handful of things that have kept me smiling this year that wouldn’t have happened if I wasn’t chronically ill.

  1. January 2016 – After BBC 3 Counties found my Cosmo Articles and my blog I took part in a quick phone interview to discuss disabled dating and ‘The Undateables’. Having been approached by ‘The Undateables’ before I took advantage of this opportunity to express how labels such as the shows title really are not helpful when tackling social stigmas.12583607_824636114328836_1166901021_n
  2. February 2016 – I was invited down to the BBC 3 Counties studio to participate in a valentine’s day segment on dating and disability. I was extremely nervous but the humour I manage to find in my conditions meant that I had several great stories to tell. It was a surreal experience that received great feedback and really boosted my confidence.12695785_835851056540675_1209977806_n
  3. March 2016 – Finally I realised the importance of not apologising for being the way I am. My genetic makeup makes me who I am. So what if I am a bit of an oddball with misbehaving limbs? If you feel uncomfortable around me then take a look at yourself and your views first, because my genetic make-up isn’t something that can be fixed and I no longer feel like I have to apologise for it.
  4. April 2016 – After waiting just over a year I finally was admitted to The Royal National Orthopaedic Hospital Stanmore for a 3 week inpatient pain management program. I’d been extremely nervous about this, and if I’m being honest didn’t see how they could help me short of waving a magic wand. 8 months later and I’m still putting my pacing lessons into practice (I slip up now and then but on the hole I manage much better), and I have a flare up plan that works!
  5. May 2016 – this had been a hard month, between being assaulted and the Drs telling me they were pretty certain I had MS (turns out I don’t but that was a scary few weeks). I was pretty much at my lowest point here. Then at the end of May I was offered a preliminary contract with Britain’s Next Bestseller. Now sure I may not have reached publication due to not hitting the pre-order requirements but hell that was a confidence boost and a half. I had a publisher believing in my work and that’s good enough for me.thumbnail_Regan Final Cover (2)
  6. June 2016 – I was still being investigated for MS, but with a wonderful man by my side I was managing to take it all in my stride. I was starting to see the funny moments in being ill again rather than allowing myself to be swamped in fear.
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  8. July 2016 – This marked 4 years since I had had to leave my midwifery training. Usually  I would mope about and be quite tearful. This year whilst the sadness is still there I can smile when reflecting on it. For if I had never become ill all the wonderful opportunities I’ve had over the last 4 years would never have happened.
  9. August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
  10. September 2016 – I started my 2nd year at university. I’d survived my first year and am fortunate to be studying at a university that goes above and beyond to help meet my needs!
  11. October 2016 – I was pretty ill and hibernated for most of this month. The fact that I recognised this and took care of myself was a huge leap forwards for me.deacf0c45b71fe38bc45675bced94b07
  12. November 2016- I ended up back in the hospital for awhile. Nothing out of the ordinary in that respect other than the fact I have a huge fear of this particular hospitals neurology team. After being misdiagnosed by them before it was no surprise when I found them to be as pigheaded and ignorant as previous. The difference this time around was that I had the confidence in myself, and enough knowledge of my conditions to advocate for myself rather than allowing them to treat me incorrectly.15128841_1048302218628890_7420253256398203646_o

Everything that’s happened throughout the year whether big or small has been impacted by my health. Previously I would have told you that was awful, I wish I could be ‘normal’; whilst yes I’d love to be healthy, I cannot deny I have an exciting fun filled life that if I wasn’t a spoonie would have been drastically different.

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