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Wednesday, 18 January 2012

Living with it...

Read my blog entry from November 2011 for this to make more sense...

I've decided to attempt to write this blog on a fairly regular basis again, especially as I have something real to write about - which is the experience of being diagnosed and living with MS (rather than my usual 'bus rants' or hangover updates on Facebook). If this is the first you've heard about my condition, it's because I have only told family, close friends and my boss - I don't want to be known by my condition, and I can get on with a fairly normal life!

There will be a mini-rant here and there, but I'll try not to go on too much. If you don't like it, then no need to read on (quite honestly, if anyone else read this other than me I would be surprised).

Anyway, it's now January and I still haven't had my medication as promised. Thankfully this is funded for me, but it can take a while to get round all of the "red-tape" in place, due to spending cuts, etc. The funding came through before Christmas, but still nothing.

I have to say this whole process has taken an extremely long time, and really hasn't been handled very well - I expect many people with MS or other illnesses have had, or are having, the same experience.
While I can accept and appreciate that a diagnosis won't be quick, the road on to the diagnosis, and after has been a long one! To give you an idea, scroll down to see how long this post is, agree that there is a lot of babbel on there, and give up...or read if you wish of course.

November 2010 - After having an MRI scan for hearing problems, an Ear, Nose & Throat specialist refers me "urgently" to a neurologist. (After questioning me about past health, which since 2007 hasn't been 100%.)

April 2011 - I finally have my "urgent" appointment, and the neurologist is reluctant to do any further tests, as he thinks nothing is wrong with me (making me think I have turned in to a hypochondriac).
He then says if I had MS it wouldn't be worth knowing, as I have lived with whatever I have for 4 years, but I may develop MS in the future (due to my neurological damage).
I ask for a further MRI scan anyway and a Lumbar Puncture to be sure, the MRI scan I had two weeks later.

June 2011 - I have my Lumbar Puncture...eventually. Firstly I get to the hospital at 9:30, where they stick me in a ward with very unwell elderly ladies (it wasn't pleasant, but I won't go into detail here!)
They then move me to another waiting room, and forget about me for 2 hours. I have to remind them I am there, but in the time I have waited, someone has queue jumped (well, is seen before me), and I wait until 4pm to have my Lumbar Puncture - I am told the results should take 2-3 weeks.

September 2011 - I get my results, which are 3 months late. I get suspicious as I enter the consultation room, with my parents for support, and there is an MS nurse and a Neuro-physiologist in the room, as well as the consultant.
After being questioned by the Neurologist he diagnoses me with MS. Surprisingly my Dad starts sobbing (or maybe not THAT surprising, as he was the one who cried when we watched "Titanic", whereas me and my Mum didn't), poor bloke.
I ask what can be done next and am somewhat relieved that I finally have a diagnosis, so I can get on with treating and living with the condition, in a way that will have a positive impact on my life.

November 2011 - I speak to the MS nurse who explains everything in further detail from symptoms, to treatments and anything else that is relevant. I go away feeling more positive about the situation.
After a couple of days I decide to ask for Rebif medication, which I inject 3 times per week, and can help stop or lessen the severity of relapses! (It comes with a flash device, which looks like a mobile phone - this injects me and reminds me when my last treatment was - my short term memory resembles a goldfish memory...my short term memory resembles a goldfish memory...sorry, crap joke intended).

December 2011 - Just before Christmas - The funding has come through for my medication! I have a blood test to check my liver, as the medication can damage the liver, and they like to have something to compare it to. I also have my first physio appointment, where I learn a few exercises to build up muscle tone, and hopefully I'll expend less energy in the long run.

January 2012 - I still haven't heard a thing about my medication, but the lovely MS nurse has chased this up for me, so we shall wait and see...hopefully not much more waiting!

My close friends and family have been a fantastic support, even before I was diagnosed and I went through the stress of not knowing, being depressed, being so tired I just can't get out of bed....etc.

My MS nurse and workplace have been fantastic, and very supportive too.

I've found out who my friends are, and who my acquaintances are. One lot invite me out and keep in touch, the other lot will say hello if I pass them in the street. This isn't a dig at anyone, that's life! :)

Ciao for now. Remember life isn't sugarcoated, it's real and this is...it.

Jo xx


Bunny said...

So, I just read your blog. Not gonna go to much into your most recent posts but a short "sorry to hear that" will probably suffice. I hope so anyway. I do think you should try and write more articles about your political loves and hates though. And if you get blogstipated at any time, I usually find reading the BBC.co.uk website helps a lot. I also write a blog called verybunnydiary.blogspot.com so if you're bored at anytime go take a look. Keep writing Jo.

Jo said...

Thank you for the good wishes Bunny. I'm sure there will be more blogs about my political loves and hates in the near future - writing just about my health would get pretty boring!

I'll go and take a peek at your blog in the meantime.

Best wishes,