To date this is the worst flare / relapse I have ever had. It has been sad and also frightening.
Sad because nothing I do seems to make any real improvement or relief. I have tried steroid loading, extra B12 injections, stretching, massage, gentle physio, increased magnesium, stronger pain meds, compression wear, meal replacements, mindfulness, positive readings, distractions … and still no improvements.
Frightening because I have no idea if / when it is going to improve, and it’s been 4 months and counting…
This particular flare has tested me harder than ever before and I know the cracks are showing. I feel for my husband too, as he has been working around the clock to try and help me cope. He is close to exhaustion too. Where would I be without his kindness and spirit? I really don’t know…
The fatigue is unbearably crushing and it is even hard to breath. Sleep is sporadic and painful. My joints and muscles are painful, stiff and weak. Migraines, balance issues, terrible stomach / bowel pain, face rash, vision problems, absence seizures, tremors, spasticity, nausea and fevers are part of my daily routine. I even had a 6 week bought of trigeminal Neuralgia thrown in for completeness sake!
It is hard to find the words and energy to describe how we are coping and what we are going through; we just keep on doing our best. It has felt like I am a prisoner to these four walls and bedroom. But I can’t afford to think beyond today or even this moment. It can quickly become overwhelming.
Not many people are aware of what can go on behind closed doors when flares or relapses happen. It is usually different for everyone and there doesn’t seem to be any logic or pattern to what will happen and when.
Some choose to go to hospital for assistance and that is often a wise choice, but I have always preferred to try and be at home with my furries and where I can have access to the things I know. It is an individual choice and I feel like it is some of the only choices I am still able to make at this time of my life so I cling to it desperately.
So why write all this?
It has always been my hope that if someone is prepared to share their experiences and try to increase awareness, it will ultimately help everyone out there. Sick and healthy alike.
Is this incredibly naive? Possibly.
If we try to tell our truth and our experiences and people still don’t want to listen then it is a conscious choice on their behalf, and not because of our lack of trying.
I won’t pretend to think I am changing the world, but perhaps I am changing some small thing for the better?
That has always been my ultimate hope after all.
What will tomorrow hold for me? I don’t know, but I have existed this long on hope and it is now how I try and face each and every day. I truly hope tomorrow will be a little kinder.