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

Posts tagged ‘blog’

Beyond The Abyss

When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.

After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?

In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!

Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.

If you want to check out my article please click on the following link http://www.cosmopolitan.co.uk/love-sex/sex/a33626/sex-questions-disabled-girls-are-tired-of-answering/

 

Disabled Dating; A Taboo?

Back in 2012 when I first became ill I was in a long-term happy relationship, however my partner at the time did not deal at all well with my disability. He soon ended our relationship. At the time I had not given a moment’s thought to the difference between dating when you’re able-bodied and dating when you’re disabled. The reason for this is because to me I have always believed that it is who you are on the inside that counts, to me it does not matter if you have one leg or six!

My views however are that of a minority of people’s it would seem. Whilst people are happy to get to know you, anything beyond friendship would seem to be forbidden. To many it is just too embarrassing to be romantically linked to someone disabled, simply because we differ from the norm. This idea, to me, was reinforced when several months ago I was approached by the TV programme The Undateables, to see if I would be willing to take part in their show or if I knew anyone else disabled who would. At the time I turned down their offer appalled that I was considered undateable simply because I am disabled. However now I sit here considering whether I was wrong to turn them down so quickly. Isn’t hindsight a wonderful thing? After all I have been single for two years now.

An able-bodied person is much more able to go out and socialize and meet new people whether that’s at a club, restaurant, coffee-house etc. They have much more freedom and accessibility to choose to do this. I would love to meet new people. However take for example the fact that  I have no control, currently, over my left arm, I could hardly go to costa and have to apologise every few moments for hitting someone! I know some of you may think Online Dating to be the perfect solution. For some people I won’t deny this may be a fantastic idea but not for me, as it doesn’t take away the above issues which often can put people off when you inevitably meet. I want potential partners to get to know my personality and learn to dodge to my spasming limbs at the same time.

Society’s view on disabled dating is a hideous one. If two disabled people date, or marry, they tend to be rather harshly judged. You often hear and read comments on how they are unable to care for each other, or if they choose to have children that the child’s needs will be neglected as the parents will be unable to care for him/her. These views that are often voiced loudly and publicly are completely ignorant. The owners of these opinions in nearly all cases have never met the people involved so cannot make these judgements.

Able-bodied/disabled couples are also criticised. When out in public a lot of people will presume that the able-bodied partner is a nurse/carer/sibling. They rarely come to their own conclusion of the actually reality of partner/date. Again these relationships come under fire, especially online where people state that they should not get together as the able-bodied person will just end up being a carer. These opinions have been voiced with what I expect to be no insight.

I’d like to question these people who claim us disabled people cannot date either able-bodied or disabled persons. I want them to imagine they became ill and could not be cured. What would they say then?

Naturally I defy these naysayers.  I believe that I’ll get my fairytale ending, just with a few more spasms, falls and laughs than originally expected!

Out of Control

I’m not sure where to begin. There is so much pain and if I am quite honest it is making everything extremely cloudy. After months and months of being seizure free I think today I had one, the memory loss that I seem to be experiencing confirms it. The devastation this causes is hard to put into words. I’m scared to leave the safety of my bed in case I have another, as one fall will be all it takes to pretty much guarantee an ambulance trip to the local hospital. After spending the last two days there (one planned trip, one unplanned), I don’t particularly fancy going back again so soon.

One of my Dystonia symptoms is a strong twitch/jerk, in my left arm. It flings my arm out rather violently to the side, it is completely out of my out of my control. This has been controlled by 3600mg of Gabapentin for the last two years but this no longer seems to be enough. It started off with just my shoulders jerking, I should have gone to the Drs then but instead I ignored this symptom. It’s got to the point now where my arm is flinging itself out to the side every few minutes with such a force that it causes horrendous pain when it collides with something, which it often does. I have had to resort to wearing a splint on my wrist to protect it as it had become rather swollen from the several times it has hit door frames, walls, hospital beds, etc.

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My GP has decided to up the amount of Topiramate I take, which is an old antiepileptic medication to see if that will help. I take Topiramate to control my migraines but as my GP pointed out old antiepileptic medications such as Topiramate and Gabapentin often have many uses. So fingers crossed it works as I’m really struggling to cope. In all simple truth I just want someone to hug me but as I told my mother earlier I’m to scared to let her do so incase I hurt her.

I’m scared of my arm, the pain its causing and how my body irrationally responds to pain. This situation is impacting my life already – I daren’t walk into a shop now I’d break their stock – and I refuse for my life to be put on hold yet again! I really hope my little Dystonia Alien can hear me. I hope he is trembling in his tiny boots. As eventually my fear will give into rage, and I sincerely hope that the Alien has the sense to uproot and leave than do battle with me yet again.

Dream A New Dream

Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.

He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.

My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.

 

Mallet Finger or Dystonia?

Last Friday I attended an outpatient Hand Therapy appointment. I thought this would be a simple check up on how my finger is healing, splint it back up and send me on my way home. What I forgot to factor in is that with my body being rather dysfunctional that would all be a bit too simple! I saw a lovely woman who after assessing my hand decided that my previous diagnosis of Mallet Finger was incorrect and the Dystonia is in-fact in my whole left hand. After questioning and examining my hand for a while she came to the conclusion to that the Hand Dystonia was pre-existing and was most likely covered up by the Neurological Lyme Spasms I had been experiencing previously in my hands.

I was rather thankful that I did not go alone to the hospital appointment as the diagnosis came as a bit of a blow.  Being accompanied to appointments no matter what your age is something I think is rather important. An appointment may seem like a routine check up but you never know what conversation you will have to have and support is vital. Sometimes just having someone else to listen to the conversation so they can make a note of anything you miss is a huge help. For me having someone I trust listen to me panic afterwards and help calm me was exactly what I needed. Being a Reflexologist, obviously using my hands is vital, however the hospital have advised me to be on hand rest till the end of February when they will assess the splint need again, I will have been on hand rest for almost 3 months by then.

Thankfully in the meantime I am seeing my lovely Neurologist at the end of this month for my Botox injections and to get his opinion on my hand. I am on countdown to seeing my neuro as my Botox last month did not take and I have been in agony since. My GP yesterday gave me some new muscle relaxants to try so im keeping my fingers crossed that these will offer me some relief until then.

 

Looking Forward

At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.

As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.

I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.

Let’s Talk About Meds!

I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.

One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.

When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!

At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.

Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.

Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!

Excitement and Nervousness

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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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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Mixed Appointments

I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.

Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan.  The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.

One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.

I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!

On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.

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