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

Posts tagged ‘wheelchair’

Wheelchair Outings

Over the last few weeks several of my consultants have advised me to stick to bedrest and insisted I use my wheelchair if I choose to go out. With most of my recent trips out mainly being hospital appointments, this wasn’t too hard, and so I didn’t get too worked up about it. I will always be the first to admit that I’m not great at being in a wheelchair, it’s not the lack of independence that bothers me (as the whole point of the chair is countering how dependent on others I am), no my issue comes from trusting no-one, including myself, of being in charge of a wheelchair

These issues come from within, and anyone who has paid witness to my attempts to push myself will agree, I am awful. Spatial awareness and coordination are key components when nailing the art of wheelchair driving; skills I am lacking in. I am surprised shopkeepers don’t barricade the doors when they see me coming so as to preserve their stock. The most impressive incident was in New Look around 3 years ago, the domino’s effect I caused in the sale aisles was comedy gold. Due to my interesting wheelchair skills, I tend to presume that those pushing me will be just as awful as myself, resulting in many ‘please don’t kill me’ panicked expressions whenever they dare to venture near a curb! In my opinion wheelchair driving lessons should be part of the deal when being prescribed one.

Yesterday Damon and I moved into our first home together, so decided to take a trip into town this afternoon to pick up the odd household supply. We’re very lucky that the area we live in is rather flat, it couldn’t be more perfect, this means that I’ll be able to get out and about even when my conditions are severe, which is something that previously would have been impossible. Damon’s quite adept with the wheelchair (we’ve yet to crash in to anything), but that didn’t stop me from pulling hilarious terrified expressions repeatedly whilst we were out today.

 

Happily away from any curbs…reenactment of curb fears

When I was first prescribed my chair, although it provided me with freedom, I found accepting that I needed it hard. In my eyes, it was a reminder of what I was unable to do. Now when I look at it I automatically smile, my fear of it always provides so much laughter, and it enables me to do every day activities, something that I’m extremely grateful for.

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Accepting Limitations

Yesterday was a hard day physically & emotionally. I was struggling to sit up without my heart rate shooting through the roof, experiencing extreme dizziness, fatigue and high pain levels. This is my new normal though, and it’s exhausting. Late morning I had a phone meeting with my university disability advisor. She enquired about my symptoms and their impact on day to day life, along with what advice I had been given from the Drs; this was so that a plan could be put in place for me to safely complete the next semester of my degree. Admitting that I was fainting 20-30 times a day on average, had been advised to be on bed rest and use my wheelchair if I had to go out (which results in dislocations if I self-propel) was not something I found easy to vocalise. The little stubborn voice in the back of my head was protesting that I was perfectly well enough to physically attend my lectures. However not being able to guarantee I’ll remain conscious, being unable to eat without fainting, and with tachycardia developing just by sitting up a decision was made that I could not safely attend uni without putting myself at risk. Normally I’d argue against this, and I wanted to, but I have to remember that it’s not just myself I would be putting at risk. Now this doesn’t mean I’ll be putting off the semester till next year, it just means I’ll have to complete it from home which is perfectly doable.

Despite the fact that I know this plan of action is reasonable and realistic I couldn’t help but feel defeated. I know I’m not well enough to attend class, but to me that’s not acceptable I feel as if I should be trying harder; it’s a ridiculous attitude to have, but it’s there nonetheless.

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Late last night I found myself feeling deflated and quite sorry for myself. I know this is pain related, I haven’t had so many bad pain days in a row for some time, so when periods of pain flare ups occur it impacts my view of things. Normally I’d just increase my meds, count down till my botox injections, knowing that in a matter of days I’ll be enjoying a good spell again. The fact that (unless an emergency spasm occurs ) there is no botox, no muscle relaxants, and limited pain relief options available until after the baby is here is hard. This is mainly due to having to accept my limitations once again.

Talking through how your feeling is something that I feel is undeniably important in enabling a person to help themselves. It’s the main reason I’m composing this post, so that I’ve expressed myself and can start focusing on being proactive rather than moping about.  I spent a good chunk of time talking to my mum about this turn of events yesterday afternoon. Looking back now I can already laugh at the number of times I uttered the phrase “I don’t understand” or “I don’t know what to do”. The reality is I understand perfectly well why I’m not able to go to class, I have a crystal-clear understanding of the fact all of my chronic illnesses can get worse during pregnancy (and the majority of them have) however this is a temporary change, I also understand it’s okay to feel this way.

There’s really not a whole lot I can do to change the situation, unless anyone can point me in the direction of a fairy godmother? I can manage my pain the best I can but other than that focusing on the positives that surround me is the best way to keep smiling; when I look at what’s already happening this year (moving to a new flat, expecting our son, still being able to complete the academic year, and a publisher agreeing to take on my novel) I have to admit I have more than enough to be smiling about.

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Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

An Exciting Month!

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

But You Don’t Look Sick

 

12394480_804191833039931_1805113062_oWell first off thanks for the compliment! I work hard on making sure that I don’t look completely awful. The more my body is playing up the more care I take with my appearance; it cheers me up, and that’s one step towards having a good day. Mr judgemental Taxi man, I may not look as ill as you would like me to, but I was on the way to the Drs this morning because on top of all my chronic health conditions I had contracted yet another chest infection along with sinusitis. Yeah my immune system sucks. Infections on top of my pre-existing conditions are always detrimental and not something my body copes with well. I needed to get a prescription to nip it in the bud!1419509_804226453036469_22790295_o

What do you deem as sick? Do I need to be wheelchair bound, using a walking stick or screaming in agony? Some days that is me. There are days when my meds are not strong enough to control my dysfunctional body, where my body contorts and contracts into positions that you could not imagine. Would you believe I was sick then? Not everyone does. There have been healthcare professionals who have stood by debating over which symptoms are real and which are fake in an attempt to get drugs. This is simply because they do not understand my conditions, I do not blame them, it’s not like my brain has developed the common ailments after all. However taking a moment to listen to someone before making a judgement is not hard.

Next time you see someone who isn’t stereotypically ‘sick’, pause and think.

Week 7 – Agony

imagesI’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous.  I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest

Saying Yes To Help

When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.

Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.

My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…

Taking Dystonia on Holiday

We recently got back from a beautiful family holiday on the coast. The weather was fantastic, and there is something relaxing about waking up to the sound of the sea lapping against sand. Going on holiday with Dystonia requires a fair amount of preparation. Every medication I’m currently prescribed has to be brought with us, just in case of an emergency, so that we can try to ‘contain’ the amount of spasms and deviation my body endures. Even though I can walk, both my walking sticks and my wheelchair were also packed. In all honesty I thought that packing the wheelchair was overkill, but then I have never enjoyed being it, I used to quite literally bum shuffle around the house rather than use my chair.

As many of you will be aware I have recently had a change in neurologist. At my first consultation with him he declared that he would not be following my old injection routine and that we would be switching from 6 weekly to 10 weekly injections. My objections to this change fell on stubborn, deaf ears. Due to his determination I spent my holiday, and the weeks either side of it, unable to consume solid food. Smoothies and soup were my saving grace. Chewing led to rather painful jaw spasms. It made sense to switch to soft/liquid foods in order to trigger the spasms less.

I spent several hours on a couple of separate occasions functionally blind whilst we were away. My eyes had spasmed shut. This was a complete shock to the system, my condition has been incredibly well managed for so long. It is my arm and jaw that I am used to contending with; not my eyes. I don’t think I’ve felt as thankful for my wheelchair as I had in that moment. For once I did not begrudgingly sit in it, I clambered in thankful that it enabled me to still be out with my family whilst lessening the risk of injuring myself. My family were fantastic, describing the sights in front of them to me so I could conjure up in my mind’s eye my own version. My brother amused us all by whizzing around the aquarium with me clutching on to the wheelchair with fear and hilarity.

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I would much rather have not had to fight my Dystonia whilst I was away, but in hindsight I’m glad I had no option but to do so. Not only did it create some great memories, but it gave me the strength to not back down when I visited my new neurologist this past Wednesday. I stood my ground and managed to get him to agree to seven weekly injections and back at my normal dosage. This has left me feeling optimistic and far more relaxed about my upcoming move to university.

Reflection

When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.

I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.

Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.

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Dystonia: 2 Years on

Yesterday marked two years since I became ill with Dystonia and had my whole life turned upside down. I went from first year student midwife having the time of my life to struggling to do simple tasks like putting jeans on or getting around the house. Life has not been the same. I must admit that despite my best efforts I was rather emotional yesterday and found it extremely difficult to be cheery. However I must slap myself on the wrists and wipe away the tears because despite all that life has thrown at me I have not and shall not give up. Yesterday may have been the two-year mark, but today is the day I found out I have qualified as a Reflexologist and tomorrow is full of possibilities!

I could focus on the negatives, for example the many ambulance trips to hospital, but there is simply no point in that. Where would it get me? Over the last two years I have achieved so much, met the most inspiring people and had opportunities to do things I would not have been able to do if I were not ill. I may not be exactly where I thought I would be now, yet I have achieved more than I thought I would be able to whilst living with Dystonia. Life is unpredictable and is a bag full of mixed emotions, but what you are given is what you have to deal with. I do not see the point in letting it get me down. So I’m cherishing the memories I have, riding whatever dystonic spasm that gets thrown at me, and celebrating the wonderful opportunities that I am fortunate enough to have had and to be receiving!

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