Multiple Sclerosis is a Bastard Disease

Its taken thirteen years for me to have a full on relapse I had all the usual bit from loss of sight to weak limbs, when necessary I would use iv steroids to try and speed up the recovery but this time my immunity is well and truly screwed after the eight weeks on Oxy. If I was to use the iv steroids at the moment I don’t think this worn out body could handle them.

I tried really hard to get out today it took two hours to have a shower and get dressed, I was so fecked by the time I reached the car I was only fit to drop into dunnes and send hubby on a supermarket sweep to get something in for dinner.

I have overcome this bastard disease by refusing to accept it and get better as soon as physically possible, not this time getting showered and dressed is like climbing a mountain  I am weak and exhausted all of the time. I went into Twist soup kitchen the other day to try and do a recording for citizen Irish my youtube channel. I was delighted to see that there was no one there as I did not have the energy to speak let alone interview people.

So this is the big one the relapse I have always dreaded and hoped would never happen to me, I know this has happened as a direct result of the stress I was under recently. I had to take on the might of the HSE and thanks to the assistance I received from Sinn Fein; I did get my treatment for the chronic nerve pain after eight weeks on the heavy stuff which I believe caused the perfect storm for the MS to attack. I couldn’t eat for days at a time and was living on tea, oxy and morphine. Every day I fell deeper into the abyss I am now living in and the really sick thing about this is it was all avoidable.

My nerve pain will return in five weeks and I don’t have a follow up appointment the pain clinic so the fight may begin again very soon. My friends on twitter and facebook kept me sane their support enabled me to fight, I may be asking for their help again in five weeks.

Our health service is inhumane surely there is a possibility I could be taken in for a few days and get the immunity built up? which would allow me to use the steroids and be in with a fighting chance. I refuse to accept that this is it, a lifetime of education and employment is desperate to get out in the world again even if I have to do it in a wheelchair so be it because this bastard disease won’t stop me living a productive life.

Comfortable Me – Moving Forward

Moving Forward, dont you just hate that soundbite? at one point I had promised myself I would slap the next politician to say it; in a virtual manner of course. I am stumped to find a simple statement the best describes what I am doing at this stage of my life, entering a new stage in my life cycle seems so pretentious so I guess I am stuck with Moving on or Tuas Nua I prefer the latter.  I am still undecided about the name of my business Elevate which seems to appeal to all sectors and comes highly recommended is also a children’s TV program, I have a feeling this is why Papillon is niggling away at the back of my mind still?
I know nothing can be achieved until I face the MonSter head on and get well before I embark on my journey back to the world of the employed.  The stress of the past two years caught up with me some months back but me being me pushed the need to care for oneself to the bottom of my list of priorities, that is until I have no choice but to accept its time for the dreaded steroids! Of all the medications I have used over the years Steroids have a horrible effect on me, I get oral thrush first then it exhausts me for a couple of weeks until one day just like the butterfly Jennifer emerges from the mist. I have energy and a zest for life again which of course doesnt last however things balance out after a few weeks and I reach my comfortable ‘almost normal’ four days a week of living with a recovery day in-between, this is the stage and place where I live.

I really don’t want to have treatment because I know, it will result in a state worse than that I am in at the moment. I could wait it out and see if things improve in a few months but then what will happen to my plans for employment? The couple of weeks of yuck will I hope help reduce the inflammation in my brain and allow me the time and energy I need to launch my Tuas Nua, I cant get out of this one not after almost a year of seeking a place where I can function as almost normal; so I am off on Monday morning first thing I will put up with the yuck and no doubt vent on twitter but I will get through this. When Jennifer emerges from the mist she will be ready to begin this journey; just like a butterfly.