Archive | March, 2013

Expecting too much of myself and others?

15 Mar

This has been a hard week for me.  Everyday I have been ranting, emotional, undecisive and feel incredibly trapped.  Trapped inside a body that is slowly being destroyed.

Choosing a DMD which may help slow it down slightly (30%) is one of the hardest things and I never thought it would be.

I’m never going to be a Vet Nurse and that is something that I have worked towards for many many years and its hard to take.  Its gut wrenching to be honest, soul destroying stuff.  I was halfway through my Counselling training.  I had to take a break due to finances and during that break, wham, you have MS.  Well, thank you fate, yet again for destroying my B Plan.  There I was thinking that after having an extremely poor education, I was trying to pull myself back up after dropping out of Nurse training post Health & Social care training because I felt so crap that may be just may be I would finally get somewhere.  No, no, no.

Now, some might say, I should pick myself up and carry on Counselling and I agree but I still won’t be able to afford it, my health will continue to deterioriate and the Government will not offer support to me in anyway whatsoever, so someone please tell me my options eh??

Don’t get me wrong here, I am not depressed, I am pissed big time.  So miffed off in fact the rock music has been constant this week.  I am angry at so many things and people I could probably burst if I started to unload.  This I need to do and I used to have a very good analyst who helped me through my, I am fatigued and ill but no one believes me phase.  Surprise surprise, I cannot afford her.  It would be nice to have the minimum DLA to help pay for that, but I will not be awarded anything because I am not disabled enough, ppfftt.

This condition should be payable upon diagnosis in my opinion.  Yes, it is as individual as the person it invades but we all have the same condition.  So, we should be awarded a basic rate at first if that is the case (more if needed, as everyone is different) and reviews should only take place as the condition advances to make sure we have payments upped to reflect our day to day struggles.  I can’t get a blue badge because I won’t get the right rate of DLA even if I were to be awarded.  Why oh why are they sending out quacks to do visits?  It should be enough that our Consultants have diagnosed us, period.  All they have to do is send a standard letter to the Neuro’s Secretary asking if said person applying has MS, secretary therefore confirms, job done, award given.  There I’ve just saved ATOS money.  No quack is making me undress either, unless they are GMC registered, they are not getting past the front door.

My DMD is going to make me feel like shit, so what happens if my Saturday job becomes too much?  What then?  I am the only person who can take/pick my son up from school, so I have no help with any of our daily tasks.

The minute my Neuro opened his mouth and said it was MS, I was classed as disabled.  That should be enough but the reality is I have no protection from anyone.  Oh I forgot the DDA, what a crock that is, companies still bully, get rid of and wangle their way out of their responsibilities and moral compass and we all know it.

So, this leaves me with one real choice, I am going to fight for MS.  Ironically, when I was studying for my Health & Social Care course, we were set an assignment – pick a disease and come up with a charity even to raise money for said disease.  Then, we had to present our ideas to the first years.  Guess what disease I picked?  Yup, MS.

I have always fought for it and now I have it.  I have to live the reality everyday like many others.  I’m going to spread that reality as far as I can possibly take it.

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Help is coming (but has sent me crashing)

5 Mar

I have been having a lot of trouble deciding which DMD to start and I mean A LOT of trouble.  Decision making has never been a strong point of mine but this is a nightmare.  Its a no brainer as to whether to start them but which one??  They all sound horrendous, chinese hamster ovary, human serum of some sort and then the other which causes big pot holes in your skin which are permanent!!  Not much of a choice but at least I have a choice, I am very grateful for that.  Superman cape still intact on Neuro!!

This morning I got a call from my MS Nurse.  I was relieved to finally speak with her and she said she can help with my decision, great!!  yay!!  So why then, when I came off the phone did I feel like crying myself into oblivion?

It really hit home when I spoke to her that I am really ill.  You would think that the diagnosis from Neuro would have been it, no not me, it was the friendly nice nurse who upset me.  She sounds like the shoot from the hip kind of woman and that is my kind of woman.  I need people like that always have done.  I like to know where I am and I cannot stand wishy washy people who are too scared or polite to tell it like it is.  No time for that with MS, I need honest facts so I can deal with it.

I cannot believe since looking at the DMDs how blumin vain I have become.  I was sure Copaxone was the one for me but I just have not been able to get over the lipoatrophy.  This causes the fat cells to be destroyed leaving big dents in your skin (injection sites).  Why can’t I get over this??  So, I think I’ve narrowed it down to between Avonex and Rebif.  Now with this, I am petrified of the liver problems.  What I need to ask the Nurse is, if the liver levels become abnormal, if the drug is stopped does the liver return to normal or is the damage permanent.  If the liver can repair itself once off the drug then I think it will be Avonex.  I will be nervous but I can handle the injections, I have given plenty to animals and although it will be different as its me, I am not nervous or wobbly around needles, so I am hoping it will help me.

Trouble with Copaxone is the skin problems are permanent and the way I see it right now, I am not ready to ‘see’ how ill I am.  It would be a constant reminder of what is going on on the inside.  I don’t want to look damaged on the outside just yet.  I am just not ready.

I say all this and then something will come along and make me wobble about them.  I have been on MSDecisions website numerous times and everytime the results come up:

Avonex, Copaxone, Rebif.

Which one?  Any thoughts, experiences most welcome.  I would be very grateful.