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

Archive for the ‘January 2017’ Category

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.

13739611_1627270460917522_1606201696_n

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.

14540542_611550559047335_7000507228864118784_n

Advertisements

“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.

20b029639f6d5132a63a0f3fc74966e7

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.

img_1651

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.

dysautonomiaawareness4pots-jrm

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.

Dystonia and Pregnancy So Far

Each of my conditions have reacted differently to my pregnancy and some new complications with my body have also arisen. So I’ve decided to incorporate these experiences into my blog with each condition being addressed in its own post as they are all unique and confusing in their own way.

At four weeks, pregnant my neurologist told me I needed to come off all of my medication due to the risks they presented to the baby as he developed. At that time, I was having six weekly Botox injections to my eyes, jaw, neck, and left shoulder, and I was on a range of oral medications including Gabapentin, Tramadol, Cetirizine, Topiramate, Dantrolene and more. My dosage for each of these medications were not particularly low which meant coming off them was a bit a of worry, luckily only the Gabapentin caused withdrawal symptoms (something I knew to expect after having the dosage adjusted several times over the years). I’m not sure if you’ve experienced withdrawal from Gabapentin, so picture uncontrollable weepiness because a cloud looks so beautiful, paranoia to the point you’re convinced that the shadow of the tree you just walked past is going to murder you and hideous night sweats. It’s not a walk in the park by any means but thankfully these symptoms didn’t last too long.

My main concern was how I would cope without Botox and my muscle relaxant Dantrolene. Over the last four and a half years I have been reliant on my six weekly Botox to keep me resembling an almost functional person, and Dantrolene was the only muscle relaxant that I found effective and can stay awake on for more than 5 minutes at a time. After expressing my concerns to my neuro he reassured me that I may not find these 9 months as terrifying as I expected, as some women reported experiencing an improvement in their symptoms in pregnancy. I wanted to believe him badly, any improvement I would take in a heartbeat, but at the same time I found it extremely hard to believe that something as natural as pregnancy could offer me an improvement that medication was unable to provide. Now I bow down to the wonder that is pregnancy, I’m currently almost 6 months’ pregnant and unbelievably my Dystonia isn’t too bad.

For the first 12ish weeks I only had minor symptoms, which was a relief as my severe morning sickness (I was diagnosed with Hyperemesis Gravidarum) meant that I wasn’t by any means well enough to cope with any severe spasms. By week 14 however I was admitted to hospital after spending 24 hours with my jaw dislocated and in spasm, unable to eat or drink. In the end, I was in the hospital for a week whilst they attempted to figure out what to do with me; without fail several times a day a Dr would look at me and be shocked that my jaw was still dislocated. I think my let’s laugh through the pain attitude confused them further. Eventually, after my midwife got involved and advocated on my behalf (amazing woman!) my neuro agreed to administer botox to my jaw and restart me on a small dose of Gabapentin, which has allowed me to remain fairly normal with the exception of the odd spasm; but I’ll take the odd daily spasm over an agonising spasm that refuses completely to go away.

15068866_1050808738378238_7341493429776980443_o

Late November, day 5 in the hospital after being moved to maternity high dependency unit

Whilst my Dystonia is without a doubt very much present still, as it likes to remind me by leaving me functionally blind or distorting my jaw, I’m coping far better than I had ever imagined. I had truly expected to spend my pregnancy bed bound in hospital stuck on a feeding tube with irritable limbs, the fact that this hasn’t (touch wood) materialised feels like a miracle, especially as a feeding tube was at the start debated. If it could just stay like this for the remainder of the pregnancy I’ll thank my lucky stars.

So This Is Happening…

So, this is happening…Due May 2017.

befunky-collage

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.

Tag Cloud