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

Posts tagged ‘medication.’

Brief Update

I’ve been appalling at keeping up to date with my blog recently, a big apology to you all, posts will be back to normal soon. The last month or so has been crazy busy between flare ups, coursework and the launch of my debut novel. I feel like I haven’t stopped but I am enjoying the whirlwind.

I’ve been in and out of the hospital rather a lot over recent weeks to another bout of Optic Neuritis. As I have mentioned previously my local hospital is not ideal when it comes to dealing with complications. They have somehow managed to lose all my test results from last year, both paper and electronic copies, so I am waiting for my neuro to take over management of my investigations to see if anyone can shed some light on why I keep having repeated Optic Neuritis.

Coming up to 5 weeks ago now after watching a documentary called What The Health, my partner and I made the decision to switch to a vegan lifestyle. I was skeptial at first but am thrilled to find I am benefiting from it. I have more energy in the day, am taking almost half the amount of pain killers and overall feel more positive in my mental health. It’s been an amazing change and one we have decided to stick. I would love to hear from anyone else who has gone Vegan to improve their health!

Finally a huge thank you to all of you who emailed/commented/texted querying when my novel would be available to purchase, it meant a lot. Currently it is available through Amazon, Waterstones, Browns Books For Students, Foyles, and  Barnes & Noble. I hope you enjoy reading it.

I will be going back to blogging once a week so please keep your eyes peeled.

 

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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.

Spoonie Issues; Postnatal Complications

I’ve been toying with the idea of writing this post for a few weeks. It’s a tad on the personal side, but as I find blogging so therapeutic I figured it may help to write it all down. As you know almost four months ago I gave birth to my handsome smiley boy. It’s  been a whirlwind few months since and I love being a mum. However I’ve been experiencing complications ever since and after my last doctor’s appointment I feel a bit shaken up.

With the exception of 5 days (spaced out) I haven’t stopped bleeding since I gave birth. At first I put this down to the fact I obtained a second degree tear during my labour that took a long time to heal.  I frequently wonder if its related to my EDS but Mr Google hasn’t shed much light on that. I’ve tried hormone medication designed to prevent the bleeding but other than causing further hellish stomach pains it didn’t make a difference. I’ve now been prescribed a new medication to make me clot more whilst I wait for an urgent appointment with the gyny team.

It’s been decided that I need a procedure to look around and see if there is any obvious issue that hasn’t already been picked up on my scans that have been carried out over the last couple of weeks. My Dr’s advice has been that if the scan doesn’t show anything obvious that can be treated, then she recommends that I have a serious chat with the gyny team on having a hysterectomy. I find it hard to believe that at 24 years of age that a hysterectomy is my only option. In my mind that just isn’t an option and there has to be others.

I struggle with my conditions day to day as it is, throw in recovering from major surgery and the complications that come with that procedure and it doesn’t seem worth it. As you can imagine I’ve been quite wound up about it; I would love to hear from anyone who has had similar postnatal complications, and if you don’t mind sharing I would be curious to hear what treatments you tried.

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.

Welcome To The World

It’s been over a month since I last posted here, thank you for all the lovely comments and emails checking that I am okay. I’m absolutely great, on the 14th May at 22.15pm I gave birth to our little boy Stefan Elijah. I have spent the time since adjusting to life as a new parent and learning how to respond to my conditions postnatally.

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I was extremely lucky during labour as my body behaved far better than I expected it to and my seizures never reared their ugly head. Despite my original concerns about an epidural I requested one, my labour was induced via a hormone drip which meant my contractions were rather literally constant which I didn’t cope well with. Whilst the epidural didn’t work fully (I could still move my legs and feel a lot of pain despite several top ups) it took the edge off and between it and gas and air I was able to cope far better. I went from saying I couldn’t cope anymore to having my inner geek come out and compare labour to an Orc trying to get through a hobbit hole! I have no idea how long my labour lasted, at 6.30ish pm I was only 3cm, so I was not classed as being in established labour, yet less than 4 hours later our little boy was here.

Since the birth my pain levels have dropped dramatically, I think mainly due the fact that he is no longer able to dislocate my ribs! Whilst I’m counting down to my botox injections, I’m thrilled knowing the appointment is in the post, I’m managing my jaw and other spasms rather well. I no longer push myself to get through any plans I had for the day if my spasms are on the more painful side, as it’s not worth risking having a seizure. Doing this has meant that I’m not wearing my body out and am needing less medication.

My Ehlers Danlos is causing a few issues at the moment. During birth I obtained a 2nd degree tear. Despite being stitched up at the time my body isn’t healing, so almost a month on I still have an open wound. Whilst I wait for a plan of action to resolve this I’m resting and on regular antibiotics to help.

All in all I am extremely thankful that the birth was so straightforward and I am loving life as a new mum. My partner is a fantastic dad and is great at helping me out and letting me grab some more sleep. I’m aiming to get back to blogging more frequently over the next few weeks, so check back for updates.

 

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Practically Complicated In Every Way

Its been a few weeks since I last posted, and it’s mainly because I don’t have a clue where to begin. My body has been doing what it does best and excelling at being complicated resulting in very confused Doctors trying to figure out what to do with me; I’ll let you know if they ever figure that one out!

Functional is how I would describe myself at the moment. In that I can get up and dressed but it’s causing a lot of pain, and then that’s my spoons used up for the day.  I’m pretty sure sleep would make me feel a thousand times better, but between my iron tablets (I’m extremely anaemic) causing severe sickness morning and evening, spasms, palpations and generalised pain, I have found that I am lucky to get three hours of sleep a night. As most people with chronic illness know being fatigued makes everything harder and it all seems a lot worse than it probably is. This has resulted in tears quite regularly recently simply because I don’t quite know what to do to help myself.

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I’m currently 33 week pregnant, so there’s not long left to go. It reassures me to know that once baby is here I can go back on my Botox injections and safely take stronger painkillers and muscle relaxants again. Whilst I’m keeping my fingers crossed I’ll be able to avoid going back on high doses of these, it’s comforting to know that I will be able to manage my pain far better.

I’ve been in bed for three hours now, tossing and turning. My left shoulder is agony, and I have horrific nerve pain in that arm and over my right rib. I feel rather emotional, and wishing for the ever-elusive magic wand to be waved to take the pain away. I know that this flare up in the long run will be worth it, and once the baby is here I’ll forget about it. But right now, coping with a flare up of my current conditions and a flare up of my new symptoms is making things feel pretty tough.

I’m hoping that whacking my TENS unit on full and using my heat packs will help me get enough sleep tonight that tomorrow is better.

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

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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Dystonia Alien Rears Its Fearsome Head

Recently after seeing my neurologist a decision was made for me come off of the majority of my medications. It is not a decision that either of us made lightly but there was little choice in the matter. For the last four years, I have been completely reliant on a cocktail of medications and injections to simply make my day to day life manageable. It has taken years to find the right combination of medication and injection frequency, so taking a step away from all of this had been extremely frightening; I had no idea how my body would react or how I would cope. Whilst there was every possibility that in actual fact I would manage perfectly well, I was also painful aware of my medical history, of the years spent with weekly ambulance trips to the resus department. This is not something I ever want to repeat.

At first I was managing fine, the emotional ups and down that come with weaning yourself off of medication was nowhere near as bad as I had expected, and I had managed longer than 6 weeks without botox; which is frankly a miracle. However, over the last two weeks or so I started to worry, I put my symptoms down to an ongoing cold I’ve had for the last month. There was a familiar tugging sensation in my jaw, my eyes were slightly more aggravated than usual, and I was experiencing ‘violent shivers’. Before I was diagnosed in 2012, I always called my arm twitches ‘violent shivers’, it was my way of convincing myself there was nothing wrong. It’s funny how easy it is to fall back into bad habits.

This weekend my jaw has been particularly bad; it was deviating dramatically and starting to tremor. My only medication option was codeine, which left me feeling slightly spaced out but did nothing for the pain I was in. Since then my body has gone dramatically downhill. Last night my jaw spasmed, violent tremors followed, dislocations occurred and then my arm spasms joined in. I had forgotten how much pain all of this can inflict.

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last nights dystonic antics

After very little sleep and being no better this morning I arrived at my emergency doctors in the hope they could suggest anything to help. I generally judge how bad I am by the Drs reaction; she was appalled I had ended up in the state I am in and was lost as what to do.  So now on her instructions I am curled up in bed encase I have a seizure, I have emailed my neurologist in the hope he may contact me sooner rather than later, and I’m waiting for her to phone me back with an action plan. She had been debating trying to admit me in to hospital, and as much as I have my concerns with my local hospital due to previous experiences, I cannot help but feel that this is this best place for me as I can no longer eat and I haven’t successful managed a sip of water since early this morning.

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apparently I don’t need a working face

Fingers crossed things improve soon.

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