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Wednesday, 19 June 2013

Forgotten in the NHS & moving on...

Don't get me wrong, I'm glad we have the NHS - we're a lucky country. I know a few people who work for them, who work hard and get huge job satisfaction from helping people on a daily basis. However, I've come to this conclusion: if you need emergency care, the NHS is great, but if you need continuing care, then you'll be lost in the system.

I've mentioned before in an earlier blog about my frustration with being diagnosed and getting my medication, well it hasn't stopped now, it is in fact, getting worse.

The services for people with MS in my area are pretty stretched, especially with my Neurologist being on long term sick, my MS nurses have been dealing with things. The MS nurses, my Neurologist, and Neuro-Physio Therapist are excellent, but the NHS & Primary Care Trust are not!

The service is so stretched, that I only have an annual appointment with my Neurologist as it is, this was meant to be in March, and was subsequently cancelled without informing me. So everyone in Brighton & Hove with MS, is left without a Neurologist, unless it's an emergency appointment - as the NHS have so very kindly provided someone for one day per week.

I need a referral from a Neurologist to be assessed for the medication I need, something which may actually work, but it seems to be generally accepted that the progress will be slow, as my Neurologist is the one trying hard to get people on the medication. Why can't we see a Neurologist which doesn't specialise in MS? Make them learn something maybe?

Yes I'm fed up, and it feels like I'll be stuck on medication which doesn't work, questioned when I need to get benefits due to me now working part time, and if I don't get the help I need, I will get worse and could be in a wheelchair by the time I'm in my 30's. I'm now using a walking stick some days, which I try not to rely on, however some days I have to use it.

Despite all of this, I have to keep thinking that it could be much worse, and you either get on with it, or drown in self-pity, so I choose the former. Getting on with it is made much harder by probably being depressed (my medication, Rebif, can help contribute towards this), and I've felt miserable since starting the medication - I just haven't realised how much so until recently. If it wasn't for the Rebif rep from Merck Serono checking my self-injector for statistics every six months, I would just stop taking it - but if I even miss one dose they'll tell me off (obviously forgetting that I have MS, and therefore I do genuinely forget every once in a while).

As I'm trying hard not to drown in self-pity, I'm trying to set myself goals. Goal number one, is to try and get fit again. It's always hard rehabilitating after a relapse, so it'll take me a while, and unlike fit and healthy people, who can spend an hour in the gym, then go to a spin class (which looks horrendous), I currently get tired out after five minutes of my neuro-physio exercises! So my next step, is ten minutes, building up to thirty minutes, then on to Pilates classes again, so hopefully building up my strength slowly.

Goal number two is to study for my degree, which I've started on already, so by the time I'm 32/33 I should have finished it.

Goal number three is to have more fun - I've found it much harder to get out and socialise over the past few years, having to cancel things often at short notice (as mentioned in my other blogs). After looking on the MS society website, I realised that I'm still grieving the loss of my old life, and the things I could do, so I need to focus on the things that I can do. Granted I need more rest than others, but I need to find a way of coping so I can live, rather than just purely survive. I have The Peacocks gig to look forward to in Brighton in August, but if you know of any other good local gigs, message me (I have a 'Contact me' widget on this blog, or message me on G+ or Facespace). Next on the horizon: join a band, aim to go out at least once a week - health permitting of course!

I'll make reference to my earlier blog of dealing with the five stages of grief (in my own warped order), but now looking at the five stages of grief again, I'm now touching on acceptance. One thing I won't accept though is that future generations diagnosed with MS will have to accept the disease, hopefully one day, it will be cured (here's me hoping that that 'one day' will be soon!)

One more thing, please sign the petition to say 'No!' to the MS lottery, I will be eternally grateful! Say NO to the MS lottery

Anyway, ciao for now.

Jo xx

P.S: Sorry for the ads under the first or second post - I haven't figured how to get rid of them!

Links for this blog:

MS Society - The Grief Process

Say NO to the MS lottery

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