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Lucky streak...

Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I'...


Thursday, 27 November 2014

A welcome distraction...

Hello again, I felt like posting a quick blog...just because (admittedly I am avoiding reading boring chapters in a Uni book, and making it much harder for myself, but hey, I seem to work better with tight deadlines!)

My medication seems to be working, albeit slowly, and I've been hampered by various Autumn/Winter bugs which are going around. I actually had two whole days where I felt happy AND healthy - believe me, that hasn't happened in about three years. The cold I had was fought off quickly (as usual), but I didn't get the usual MS related crap afterwards, which was just amazing (some minor fiery pins & needles on my face, but that is nothing). Then, of course, I sucummbed to a horrible virus which would not go, then I got Tonsillitis AGAIN! So now I'm feeling exhausted, but unable to sleep until the morning, which then of course goes round in a vicious circle, as I need to sleep into the afternoon.

I've found some good herbal sleeping pills though, which work well, so hopefully I'll be back on to a normal sleeping pattern soon.

I had a letter last week from the Occupational Health Company that my employer uses, which included a report from my Neurologist. Essentially they can't see me returning to work at all any time in the near future, and although some of my symptoms have subsided, they have had a lasting effect, so this could I could turn into Secondary-Progressive MS (although it might not) . I think to be honest, as my medication appears to be working, as my latest relapse wasn't as long as usual (painful, but only a few weeks), hopefully minimal damage will be done in the future, which hopefully means delaying the Secondary-Progressive stage, or not going on to it at all! (Wishful thinking!)

Anyway, all I can do is keep doing what I'm doing, which is eating better, taking my wide array of supplements, and keep up with the Physiotherapy.

Hopefully then I can recover somewhat, because if my muscles get some tone back, and are in good condition, then that will ease the fatigue, as I won't need to work as hard to get up out of a chair, or walk.

Cognitive function is a huge problem with going back to work too, as I need to be on the ball there (mistakes means breaches - if you work in the financial services, you'll know what these are!)I get a little window each day where I can think and speak reasonably well without it being too much of an effort, but it is unpredictable, and some days, I can't think well at all - much like my brain being replaced with cotton wool! When I do get the opportunity, I read or I do some of my part-time degree (how I am managaing I don't know!)

I will try and write again before Christmas...bye for now!

Sunday, 31 August 2014

Out with the old, and in with the new...

Out with the old

and in with the new…

Okay, so I used a huge cliché for the title of this blog, but it fits in with my life quite well at the moment.

I have been planning on writing this blog for nearly two months now, but I just haven’t got round to sitting down and writing it. I haven’t had a blog entry on here for a while, because I wanted to have something new and fresh to write about, rather than the same old crap (like moaning about the NHS for example, although there may be some of that in this blog entry!)

I have enough material to write this and another blog, so hopefully this will get me back into the habit of writing this more regularly.

I have been going on about getting my new medication for the past couple of years, and I’ve now been on it for two months – which earlier this year I did not see happening at all.

I have been signed off sick from work since March, and have been very poorly during this time. What I used to consider good days at the beginning of my disease, now don’t exist in that way anymore, but always trying to remain as positive as I can, I learn to adapt. So now if I have even an hour in a day where I feel well enough to get something done, or where I just don’t feel so shit, then that’s a good day.

I have to admit that I have been at my very lowest point this year, the stress of not being on medication which works, the combination of which has then has made me relapse (badly, which I’ll get to later), and the fact that it seemed like I was left on my own to deal with this by the NHS. Also, the fact that I’m 27 years old, and should be living my life as twenty-something’s do, having fun, being care-free, finding my way in life.

Things are now so much harder than they used to be, and in some ways I guess you could say I’m grieving for my old life. I nearly deleted my Facebook account (yes, really), as seeing everyone posting about their travels, relationships, engagements, weddings, babies, etc, made me realise what I’m missing out on (not that I begrudge any of you a fun, happy life!)

There were times where I half wished my illness was fatal, and I wouldn’t wake up in the morning. Thankfully, I’ve come out of that state of mind, and reading what I’ve just written scares me to think I was that low!

Anyway, things feel more positive at the moment. The fact I have my medication, is a huge weight off my shoulders. Not taking Rebif also helps, as that made me feel worse than the MS sometimes! My new medication is called Fingolimod, although the advertised name now is Gilenya. All I do is take a pill each morning when I get up, and that’s it, no injections!

Like any medication there are side-effects. I had to stay in hospital for the day on my first dose, as it slows your heart-rate down around the four hour mark. My resting heartbeat was 70bpm at the start, then at the four hour mark, it went down to 50bpm, and refused to go up for a while. I was worried I’d have to stay longer (if your heart rate doesn’t go back to your original resting heart rate, you’d have to stay for another two hours).

The idea was that we were meant to move around in the day, however we were connected to an ECG machine (which measures your heart rate), which was not wireless, so therefore not easy to move around. The Cardiology person had to disconnect us when we wanted to go to the toilet, and then I had to walk to the toilet with a long length of wires wrapped around my arm (which was difficult as I had badly sprained my right ankle the week before, and was more reliant on my stick than ever).

I had to be there at 7:45am, and I had a bad night’s sleep, so after being there until 4:30pm, I was shattered. The day passed fairly quickly though, another woman was taking her first dose in the same room as me, and we got along well. We’d compare heart rates, and pretend to compete with who has the lowest or highest heart rate. The day was interspersed with a blood pressure check every hour (my arm felt like it was being crushed), and an NHS lunch. The awkward part was having to take my shirt off at the beginning of the day, to have electrodes stuck on me, by an equally awkward Cardiology person (he wasn’t a Cardiologist per se, but worked in that department).

I had to really fight to get there, after my first complaint was brushed off, I had to hassle the MS nurses who were running the clinic, and they eventually suggested I send a complaint to their inbox, which I did. I tried to tug at the heart strings, and make those above who were doing nothing, feel terribly guilty, and it worked. The last delay was a Cardiologist having a problem with the medication, which felt like she had something against people with MS. Apparently she’d been given old data, which looked like we were more likely to drop dead than we actually were. Also the department didn’t want to commit anyone, as if an emergency came in, they’d have to leave us, and then if something went wrong, the blood would be on their hands. So instead the drugs company hired someone from my local NHS trust, paid them overtime, and they had to be seconded for the day so they could monitor us. I think the drugs company realised that no one was able to get on the drug because of this problem, so decided to pay for the monitoring themselves – hopefully this is happening in the rest of the country.

Hopefully my new medication will reduce my relapse rate, especially as my last relapse was so bad – I woke up one morning with a partially paralysed left side – my leg would barely work (just enough for me to drag it along the floor, so I could get my other stick, and use both). Using both sticks was a joke, as my arm was the same as my leg. I noticed also that I had no feeling on the left hand side of my torso, which felt skin deep, as if someone had frozen my left hand side. Thankfully this feeling subsided after a couple of days, but seemed to shift to my right side, and when it had totally gone, my hands were still numb, I couldn’t feel some fingers, and my walking was harder than usual.

The relapse lasted a few months, there are lasting effects, and my balance is getting gradually worse, as is my fatigue. I try to eat well, and do little exercises to help build up my strength, but recovery can take a while. Throw in getting used to my new meds – the first month your heart rate slows down, then goes back to normal after that, and the first few months my white blood cells are depleted, so I’m more susceptible to infections (such as this cold I’ve had for a week and a half).

Well I’ve written an essay, so I’ll go for now. I’ll try not to leave it so long next time!


Jo xx

Monday, 10 March 2014

It's been a while...

Well this is my first blog of 2014, and with good reason, I don't believe in just writing my blog for the sake of it, and wanted to wait until I had something new to write about.

Since my last post, I've had various health issues, and have had yet more time off work. I've had Tonsillitis twice, which may be Glandular Fever, but the Doctor said that this doesn't always show up on a blood test...great. This would make sense, as my Glands have been swollen since October, and after the Tonsillitis seemed to disappear, I still felt really generally unwell. I had a blood test to test the Lymph glands, and that came back as slightly raised, but my Doctor said as it's been slightly raised in the past, then it's probably nothing to worry about, so to see her in the New Year. I then got Tonsillitis again recently, and she signed me off with anti-biotics.

I'm going to see a different Doctor this week though, as when I saw this Doctor last week, I said I still felt unwell, maybe the Tonsillitis has affected my fatigue, so she just signed me off, wrote 'Fatigue' as the reason, and didn't bother to check my throat or glands. Now, the term 'Fatigue' really does belittle how I feel, and is somewhat insulting - this is an illness mixed with MS related fatigue (which is not fun by itself anyway). Hopefully if it is Glandular Fever, it's something that will go away soon, I seem to get waves of being okay, and when I do I can see people and socialise (rather than doing my usual cancelling on them), so people I know don't really see me at my worse (believe me, it's not a pretty sight!)

Anyway, going on to the positive aspects of my life, things are progressing (albeit slowly), with my going on to the Gilenya medication, and I am sick to death of injecting Rebif, and have now reduced it to 2 doses per week, rather than 3, otherwise it makes me feel worse than the MS!

I was originally going to have to travel to Chertsey to take the first dose (you are admitted to hospital as an outpatient, while they monitor your heart rate on the first dose, as it slows your heart rate down), but thankfully a Brighton team has now been set up. The Brighton Gilenya team do things differently in that you have a portable ECG fitted for 24 hours (which isn't great when sleeping, as I managed to get entangled in the wires), and you have an eye scan before the first dose, you still have to be admitted as an outpatient, and have your heart monitored on the first dose.

I submitted a mammoth complaint to my NHS trust in my treatment from diagnosis until now, which got me a neurologist appointment (I should have had one anyway, but at least I got one, despite having to complain). The complaint department are yet to formally respond, even though I complained in October - someone joked I should complain about the complaints department! The woman who has been dealing with my case gave me an excuse of something being wrong with their office; I am unaware what this is, as I wasn't really listening.

In other good news, I have now moved into a flat by myself, (no more house shares). It's a council flat, so it's affordable for me with being on part-time hours, and also if the worst were to happen, and I had to retire for medical reasons (hopefully that won't happen), then it'd mean I could claim full housing benefit fairly easily. So, I am secure. Plus it's only a 1 minute drive from my Mum and siblings.

Anyway, I'll write more once I've started taking Gilenya, hopefully it will have a good effect.

Ciao for now.