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When inspiration strikes...

I only wrote one blog last year, pitiful really for someone who considers themselves a writer, but then again, I either haven't been wel...

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Monday, 27 February 2017

When inspiration strikes...

I only wrote one blog last year, pitiful really for someone who considers themselves a writer, but then again, I either haven't been well, recovering from treatment, or I just haven't felt inspired. This is a long one!

I found the following unfinished draft of a blog from September 2016 (so you could say that I wrote two blogs in 2016), and I didn't want it to go to waste. I'll follow it up with something more recent in the same post.

*Life is like a roller-coaster* September 2016.

Well, mine isn't really, but a roller-coaster is the best way to describe my energy levels since being treated with Lemtrada!

A blog so soon after the last one is a rarity for me these days, but I've pledged to myself to write more, whether it's blogging or creative writing practice, it's all good practice.

Since having the treatment back in April, I've had highs of energy, the energy soon after was probably mixed with steroids and made me feel like superwoman, and dips where I'm totally exhausted. I have to keep remembering that I had bad fatigue to begin with, and chemo can take its toll on the body. As I'm improving, I'm happy with the roller coaster flow of energy.

Since having treatment, people I know think I've had the AHSCT treatment, where the patients have aggressive chemo, and stem cell treatment after. There was a feature on Panorama, and it showed apparent miracles in some people, but isn't something I'm interested in, as it is very new & it doesn't work for everyone:

Some people also think I've been cured as I've seemed much better and happier, although I wish this was the case, it's not. However to me, Lemtrada is the next best thing to a cure for me.

Because I've been unwell for all of my twenties, and diagnosed five years ago, to me having this treatment isn't a big deal, especially as so many newly diagnosed MS'ers are being offered it. Just over a year ago, I hated the thought of going on Lemtrada, as it seemed so scary, but as my Liver wasn't happy with the pills I was on, it was either this or Tysabri (which scared me even more), so I went for the least scary option.

You say chemo, people automatically think of you being sick & losing your hair, but thankfully this treatment isn't as aggressive as other chemotherapy. Although I've had some hair loss, it's not noticeable, until you see the bottom of my vacuum cleaner which has turned blonde.

I'm nearly six months post and I still think I've made the best decision of my life so far. I have monthly blood tests until four years after my last treatment, but I think it's a fair trade really.

I've needed to move for a long time, as mentioned in a previous blog. I was offered somewhere last week, but I had to turn it down, as the previous tenant had to move out because of the neighbour upstairs being too noisy, and "other issues." Due to data protection laws the council couldn't tell me what these "issues" were, and the builder who was fitting the bathroom mentioned that she likes to play music really loud.

I know that you can move anywhere - private or council, and have issues, most of the time you won't be aware before you move in, but as I had the advantage of knowing, I didn't want to move and be unhappy (especially as I have to put up with neighbour issues now). At least I know that I have a chance of getting somewhere suitable soon.

*Back to the present day*

Well, since this partial blog was written, not much has changed for me. I'm still living in the same flat - the flat I mentioned in Septembers post came up twice more, so I bid on it again on the last time. I was second in line again, so I was able to view it. A second time around of viewing the flat I realised that it wouldn't be suitable (neighbour issues aside), so I turned it down again. I then came second in time for a bungalow, but someone else got it. Hopefully it'll be my chance to move somewhere suitable soon!

For the past few weeks I've been going through a period of fatigue, as well as having some symptoms flare up - but thankfully nothing major. I've had a burning feeling in my left hand, arm, and leg; then sometimes the same feeling on my left side. It was around a year ago that I had my last major relapse, so I've been a bit on edge! I've read online that some people report having a phantom relapse around a year after their last one (I don't know if this is a Lemtrada thing or not). On the plus side, my last proper relapse was a year ago, so the treatment has been a success thus far.

I have round two of Lemtrada at the end of May for three days. It's usually exactly a year afterwards, but you can go for a year and a month afterwards. I chose to do this as I didn't want to spend my thirtieth in hospital or recovering from chemo. I let the infusion team know before Christmas, and they asked me to reconfirm in January, by which time they'd given the slot I wanted (mid-May), to someone else.

They were very reluctant to let me go any longer than a month and a year after, but let me in the end, as it apparently shouldn't be an issue. I know I may sound mad risking going for more than a year after, but I'm sick of MS taking over every other aspect of my life, I'd like to be able to control the first part of my thirties somewhat. I look after myself well, and I try my best to be as stress free as possible, so hopefully I'll be okay.

Saying that, I had to move from DLA (Disability Living Allowance) to PIP (Personal Independence Payment) last year, and the stress of that made me very unwell.

To outsiders or to those new applying to PIP, whose condition hasn't worsened to a huge extent, may not see what all the fuss is about. People have said to me: "Well, everyone applying for it has to go through the same thing, it's only fair", like I'm expecting special treatment, which I'm not. If all PIP assessments were judged fairly, and weren't target driven, I wouldn't have minded as much. I worry that Capita and Asos will try and say people aren't eligible to fill quotas/hit targets.

I think that most people would also be horrified at how much PIP assessments apparently cost the taxpayer (pardon the biased source, but this is the most recent link I could find) Guardian Article

Another one from the BBC

I'm not necessarily against assessments if they need to be done, but I think the harm and the cost of the current way, shows that the system needs to be changed. There are some people who are so unwell, assessments just aren't necessary! (One guy I saw in the waiting room could barely move or talk, and had a feeding tube.) Money could be saved, and less harm brought if more paper evidence assessments were done instead. I feel like it's a case of vilifying sick and disabled really.

I would say that it'd be better for your doctors and specialist nurses to judge your condition. For instance, I see a neurologist, an MS specialist nurse, MS infusion team, and my GP. Why not send a form out every few years so the DWP have a document of your condition, and the medical professionals who see you regularly can judge how well you are? Rather than someone who may be a health professional of sorts, but they could be a dentist, judging someone with Multiple Sclerosis, Rheumatoid Arthritis, Diabetes, Anxiety, Depression, the list goes on. Plus the latter two conditions, making them attend an assessment will probably make their condition worse. Plus I know that I have to inform them if my condition miraculously gets better (I can hope!)

PIP assessors are meant to judge your condition on how it affects you on a day to day basis - it's hard to portray all of this. With my condition, when I'm bad, I can't do anything, when I'm good I can sometimes go about my day, but then there are the hidden side effects - I'm always in some pain, some days worse than others. I get fatigue, which is not just tiredness, as I've mentioned in previous blogs, it's like the exhaustion you get with the flu. Brain/cog-fog (cognitive fog - which makes any task very hard). Spasms - some painful some not as painful. Drop foot - I catch my right foot on things. Oh, and memory issues (which can come under brain/cog-fog, but I think the former exacerbates this). This is all despite having Lemtrada (no or barely noticeable relapses are the goal).

The memory issues made my PIP assessment draining, as they pick at every aspect of your life, including some personal questions which I found uncomfortable. Having researched PIP assessments online, and seeing negative experiences, it hadn't helped. Thankfully I received the help I needed, and didn't have to worry about this in the end, but some people aren't so lucky.

I also get ESA (Employment and Support Allowance), as I'm currently medically retired, and I'm also lucky to be eligible for housing benefit. It's not hard to see why people get annoyed when people are on benefits. When people see me, I might seem healthy, happy even, and they might think that I'm fine, and why should I get money, when they work hard all week for minimal reward. Sick people often put on a front, and when you see them, it's because they feel well enough, but what about the rest of the time?

Plus I'd much rather be healthy and be able to work full time. I get enough from benefits to pay my bills, feed me, and clothe me.

With having PIP, I can afford to pay for extra vitamin supplements I need, exercise classes to help rehabilitate me (I generally have the odd class, then do it at home to save money), and I even buy cannabis oil (hemp as the THC is removed, so I don't get high, so it's therefore legal), as the painkillers they prescribed me, give me headaches, and aren't good for my sensitive liver. I could get Sativex on the NHS (a stronger version of the cannabis oil in a spray), if I had painful spasms in my legs - I do not. I get very painful rib muscle spasms called the MS hug (stupid name!) As they're in the wrong place, I don't qualify apparently. Although I think it involves having to go up to London every few months, which would be exhausting.

I also get a Blue Badge and I choose to hire a car on Motability, the latter paid for by my benefits. The Blue Badge helps me park in accessible parking spaces, sometimes free, sometimes not, and I can park on some double yellow lines (not causing an obstruction, obviously). I rarely use the bus or public transport if I can help it, as I'm afraid of not getting a seat if it's busy. In reality, most people have been helpful and will let me sit down, but a couple of bad experiences (and being embarrassed asking have put me off!) Also, since having Lemtrada and having a low immune system, I seemed to have a constant cold from September - January, and various infections as a result.

I'm hoping that round two will stabilise my MS, next year my immune system will be working properly, and eventually I can get back to work. I'm studying a degree part-time to keep my brain active, then eventually I'd still like to teach English as a foreign language, but from home over Skype, and also proofread for extra money.

I did question whether I should be honest on this blog re benefits, but I thought I'd try and portray the point of view from someone who is on benefits - I don't want to be on them, but feel very lucky to have that safety net. Plus my blog does imply that I don't sugarcoat things, so I should be honest ;-)

Sorry for the long blog, I guess it's six months in one!

Until next time...

Jo.

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