My life with a #raredisease. All the emotions of the rainbow.

Firstly, I can’t believe I’ve not updated since June! It’s such a busy time of year, even not being a teacher anymore doesn’t seem to slow things down. So what have I been up to?: 

MEDICALLY- I’ve been getting more and more frustrated with the pace of the baby steps. The first stage of my care plan; the Styloidectomy (the bone removed from my skull in January) has worked. It’s opened the jugulat vein that was compressed and we have noticed some improvement in my ability to engage in conversations. More recently, we have noticed that I can cope with noise a little better, even managing to enjoy the whole of  Luca’s end of year play! Previously I’d sit outside the hall and just peep in for his part! 

However, as well as the right sided issues, I also have constriction on the left hand side; the pulsatile tinnitus moving to that side to ensure I don’t forget it. So, The Wizard (my ear and skull based surgeon) passed me over to The Boss (my neuroradiologist) and it was proposed that we proceed with the plan to insert a stent to open the blockage in left transverse sinus. This won’t solve everything as I have many other growths on my skull and more compressed veins that we cannot treat yet. This is due to the delicate nature of the surgery meaning it is not currently available; politics!! So the stent is not a solution but should hopefully (please)? give me some relief.

We were not told in January that this proposal had to be signed off by a neurosurgeon and the neuro in the team refused to sign off on the stent; advising us that he wanted to go through all the tests again, plus an ICP bolt (literally a bolt surgically implanted in your skull to measure the intracranial pressure more accurately). This meant that my surgeons couldn’t agree and reached an impasse. As you can imagine, I was devastated. The temptation of even a little relief is all consuming and I have been really struggling with my journey hitting yet another stumbling block! More on this to come….
EMOTIONALLY- I’ve not been in a good place, largely due to the medical frustrations. Life with chronic illness is tough and living with constant pain; mostly unbearable. My GP (and myself) are reluctant to use anti-depressants and I’ve already  had counselling sessions that were useful to a point, however, there is not much more that counselling can offer me at the moment. We decided, therefore, that I will have to find my way through this quagmire of pain, disappointment and loss of control, myself. I have mostly felt stuck in a sink hole: floundering and becoming more and more depressed.


 It’s been a dilemma for me whether to even write this post but instinctively I know that I need to portray the whole picture and that just showing the funny side or even just the factual day to day world of chronic pain is not coherent and may be slightly misleading to you the reader. So, the truth is that there have been awful days and nights; tears, panic and complete anger at the hand I and my boys, have been dealt. I’ve mostly felt that I have been left to rot. Guilt comes with dependence on others, especially leaving my husband to have to constantly fight all my battles. 

Ultimately it comes to this: I have had to cram my thoughts with how I have been shown more love than I ever deemed possible from friends old and new. This is hard as I go through the agitated emotions that come, each time someone I’ve relied on; lets me down. But, in my heart, the truth that I have a responsibility as a mother and a wife, ensures that I delve deeper than I ever believe is possible, to find the strength to continue this journey. 


PHYSICALLY: My mobility continues to deteriorate and any slight exertion: standing up,  brushing my teeth, wrapping a gift; leaves me out of breath and completely overthrown by my extreme and debilitating hyper-sensitivity. I’ve described before the pulsatile tinnitus and it has returned with a vengeance in the past months. It takes over with any exertion, making life disorientating and sometimes impossible to cope with being around others. I fall more often than everbefore and despite havuing THREE walkers, I have still managed to break a toe, sprain my ankle and hurt my back many times. 

So we decided that I could no longer continue to live the life of a princess (or more realistically, mad woman) trapped in the tower. You may have noticed on my page Tears of strength that we have had our driveway levelled, ramps put in two exits and the most amazing invention known to mankind: a stairlift, fitted so that I can twist amd turn my way down and round the corners and get to the lounge, my new day bed and craft room. It’s been great to be able to begin to reintegrate myself into family life. The independence of being able to choose where I go has been a real boost, just when I needed one. I still hate the stairlift and try and stare it out on days spent in bed; however the relief of knowing I never have to crawl the stairs again and despite it giving me motion sickness (of course) it is a real lifeline.


 (In my day room) 

So this whole journey, especially the last few months, have been a rainbow of emotions:


Resilient throughout incessant tests of strength; waiting for answers and hoping, always hoping.

Awestruck by the enduring love, positivity and energy, portrayed by those that feed my soul.

Irritated by the subservience I have to endure; my future always balancing in another’s hands.

Nervous about the the course of time; the unknown path and destination of this unplanned expedition.

Blundering through life, unable to get my bearings; everywhere I look, a stark reminder of what was.

Overwhelmed; humbled by the kindness, love, support and encouragement, that I feel I don’t deserve. 

Weakened; as delicate as a spider’s web, if one fragile strand fails; life tumbles into fragments.

Solidarity between my allies; my circle of support and the creators of my hope. Always hope.

So to the latest news: I imagine my The Boss having this kind of impact on others….t


I think he thoroughly but professionally destroyed my neurosurgeon (nameless as not worth the effort) and has managed to delicately persuade a more senior neurosurgeon to take on my case. Now we just wait to see what happens when we see him in the next few weeks. I hope  we will be able to prove how much I need this operation and have the tiniest amount of influence over my future. Thank you for your continued support in my journey. I will update you as soon as I can and will have a nickname for my new neurosurgeon very soon! 

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