My name is Adam. I am newly 25. I am in dire straights right now (and have been for a while). In response to this, I would like to establish a recovery plan. I am new to my disease (diagnosed at 23) but I have been severely affected. So, I was hoping those more experienced in dealing with this condition could offer support to me in producing this plan.
To begin, I will briefly (as I can) describe my scenario:
-Diagnosed July 2012 due to loss of sensory feeling and impairment in fine motor movement in in left arm. Diagnosed after MRI and LP. Prior to this, I had a weird numbness in my left arm which did not bother me much so I ignored it and it went away.
-Was given steroids and recovered, returning to work, in Sep 2012. 100% back.
-Stopped work in Jan 2013 due to similar issues as before - but in right hand. Put on Rebif after talking to MS Nurse about attack
-At some time around May, I had issues in my right leg. I had drop foot after walking distances. Told MS Nurse, who identified it as a relapse. I was told I would recover. The fatigue induced foot drop (which I’m told is ‘clonus induced’) started me off staying inside.
-In Sep 2013, I had a serious relapse which affected my left leg/both legs/core. I was kept in hospital for 42 days. I was partly taken in due to a phone call where I talked (screamed?) about wanting to commit suicide. I’d quit rebif as it didn’t help me. I was put on tysabri (JC+) and given IV steroids. I had physio in hospital and given some appropriate excercises.
-About 2 months ago, I had physio. Home physio gave me one lesson and identified my problem as fatigue. It is, I can walk fine at the start of the day, or when 100% rested. I had also been given a hospital physio appointment then, too. Home physio told me to go to hospital physio for fatigue help. I did, and was assessed one week and given one physio appointment where I was given leaflets on fatigue and that was all.
Bringing me to now. At age 24, I didn’t go outside but to the hospital (with transport). I am housebound. In these times in hospital I had a total breakdown where I was sectioned for a few days and was rude to staff. I believe I have distanced myself from the MS Nurse with my craziness, too. I do not have to see her apparantly, as I’m in for infusions. I’m supposed to see Dr Ford, my MS neurologist, but this hasn’t happened in 8 months or so - but problems with transport not coming for me made some of this happen.
In all honesty, I’m on the edge. I have no family so I live with (and am cared for) by friends. They grow weary of my anger and help needs, I believe. I have been told by my housemates they are going after the next year (as we signed a tenancy). I find it hard to recall the outside world and how it was to walk it.I will be alone then. It is a chilling prospect, but I must persevere and change my mindset now.
I thought I’d recover again as I’m so young and I’m RRMS. As it’s played out, I was housebound in less than a year. A wheelchair being necessary seems so brutal after so short a time. (This is purely a self-pitying bit of information to add, but I was raised in a cult from birth where I wasn’t allowed to play outside or enjoy friends. I left this at 19, which is why my family have cut me off.) Are there no options?
Any health care/medicine/whatever advice would be truly appreciated.