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Thursday, 26 November 2015

"Oh, but you look well" vs "You look well!" - Looks can be deceiving...

It's been a while since my last blog. I always have excuses, this time, I just couldn't be bothered! I've had studying to do, which I'm majorly behind on, and I'm hopefully switching meds again - all of which is causing me stress, but more on this later.

Anyway, as mentioned in my last blog, here is a blog on the social problems I've encountered with having MS.

Having MS really has made me a more thoughtful and less assuming person. In the days prior to having MS, I would be considerate on the train or bus, if someone obviously needed a seat. However, if someone who looked well wanted my seat, I'd probably be inclined to think they were lazy, or if they're female, then pregnant, so therefore needing a seat.

If I was in a medical waiting room, and my seat was nearest the door, but a seat was available next to me, I'd assume that whomever might need a seat could sit there. However, even moving up one space can help, as being close to their destination saves on energy, and if they have balance problems, could mean less objects/people to potentially trip up over.

I'd assume that someone who seemed to be walking okay one minute, but then produced a fold-up stick, like some kind of ninja weapon from their bag, would either be strange, or at the worst, have a bad knee.

I rarely thought for one second that any of these people could have a potentially serious and debilitating health condition, for the most part where the symptoms are invisible to those around them, but if you could see their pain it would be more obvious than with someone with a broken limb.

I don't blame these people too much, you can say that they are small-minded, inconsiderate, selfish - I could go on and on. I think it depends on how we've been brought up, and whether you know anyone with a chronic health condition.

Growing up, I was given the impression that anyone who moans too much is a hypochondriac. When I was unwell, I generally just got on with it, and when I was really unwell, then my parents would know. I knew a few hypochondriacs who would complain at the slightest issue, so it was a case of suspected crying wolf if they were actually unwell.

I was also told off if I was ever deemed to be lazy, so I tried my best not to be. I think the older generation, whose parents and grandparents could have served in both World Wars, learned to toughen up and not to complain.

So when a young person who looks perfectly well to them, is needing a seat, they probably think that they're lying. I think this view has rubbed off on many British people, and I can vouch I was one of them.

People think to be disabled you need to be in a wheelchair permanently. What the general public don't realise is, that you don't even need to use a walking stick. I feel that I always have to use mine in public, just because it's easier, but the reality is, I do have to use it most of the time.

I have a Blue Badge, and get nasty looks from people, even when using my stick, it annoyed me at first, now I've learned to ignore them. I've also learned not to judge other people parked in Blue Badge bays - as there was once I forgot to display my badge! Forgetfulness can happen to anyone.

People say to me: "Oh, but you look well", in a tone of voice which I interpret to be: "You're fine." There is also the cheery: "You look well!", meaning: "You look great!" I guess we're brought up to think that when someone is unwell, it must be visible

Another thing people say to me is: "You can park anywhere with your Blue Badge!" or "You get loads of free stuff and/or lots of money because you're disabled - you're lucky." First of all, no, you cannot park anywhere with a Blue Badge, council Pay and Display Bays we can, plus some Double Yellow lines, but not all. Most private car-parks we have to pay, however some allow us to park for free - which although isn't compulsory, nor expected, but with some disabled people on a low-income, who spend most of their money on care, it could mean an extra £5 towards food, or even a very rare trip out.

We also don't get loads of free stuff, there are some concessionary discounts for instance, but that is up to the organisation concerned, and very nice of them too. Companies might give concessions to help out, as those on DLA/PIP and/or ESA are mostly on a low-income. Also, no, we are not lucky - most of us would trade it for good health, and thus being able to earn a decent living.

I think aside from people's comments assuming I look fine, and financial issues, I can brush it off if it's people I don't know, however it really hurts when it's a friend or family member who doubts you. It's slowly getting better with time, as I know it's hard for people to understand, especially if I seem cheery - this is called putting on a front: as nobody wants to be around a moody person! Most of the time I want to lie in bed and sleep off any aches & pains, and it's a slap in the face when no-one listens to me, or makes a face doubting me. I'll say no more.

One last thing, I've had bad Liver blood test results back on and off for the past year, especially over the past six-months. I stopped taking Gilenya last Friday, so nearly a week with no meds, I'm feeling pretty rough. I should be going on Lemtrada/Campath (Chemotherapy), blood-tests dependent, February time...I'll write more on this another time.

Ciao for now,

Jo xoxo

Tuesday, 26 May 2015

It's been a while...

Well happy 2015 to you all - I know this is a bit late in the year to be wishing this, but this is my first blog of the year!

I've noticed on the stats option in the design part of my account, that I seem to have a lot of readers in the Ukraine, which is great (hello to you!) However, I also noticed that the referring Urls seem a bit questionable (one of which has P0rn in the title), so goodness knows why my blog is being referred from there! Haha.

Anyway, things with me are still pretty much the same - I'm still exhausted & I'm still having cognitive issues, these both are my main obstacles in not being able to work. I've been off work for a year and two months so far!

I have noticed a difference with my medication, in that I have kept to more plans, but I still need my rest days in between (most days seem to be rest days though). Although I still get mixed days, where I might feel ok (for me), for one part, I could feel like shit on the next part, I do get whole days where I feel crap. It's disconcerting on the days I feel like I have some energy or my balance isn't as bad - as this is a rarity for me, there is a danger I can go overboard and be very unwell the next day or week.

Still, I'm trying my best to be the best that I can be. I'm going to start Pilates & Tai Chi at the MS Treatment Centre in Southwick - as this is for people with MS, I feel like I will be supported well & I don't need to keep up with the others. I also have some simple exercises that I can do at home - nothing strenuous by most peoples standards, but strenuous for me! I'm eating much better than I was, plenty of fish, fruit and vegetables - I thought that trying to emulate the diet I had when I lived in Portugal would work for me (minus all the alcohol of course!)

I feel like I'm doing all I possibly can at the moment, and although it's frustrating that I can't be "normal" (what I used to be pre-MS), I have been forced to accept my illness and diagnosis for what it is - a potentially disabling and debilitating disease, and adjusting my life around that for now.

I won't give up, and I don't have a defeatist attitude, who knows, I could be just going through a bad patch, and maybe this medication could be working its magic, and maybe I will get on to an even better medication that could transform my life. However, I have to be realistic amongst being positive, in what this disease has done to me, in the past year especially.

Last year was the worst year since being diagnosed - as I had my worst relapse so far, that stopped me working, and changed my life completely. I felt my most alone last year, and I now feel that I really can empathise with others who are house-bound (old and young alike). I was probably depressed, which didn't help (I say probably as I felt lower than low, but never got diagnosed, and I don't like to use the 'D' word lightly and potentially trivialise it!) There were times I was in so much pain, that I wouldn't have been bothered if I hadn't woken up the next morning. The pain was caused by spasms, and I found it hard to get hold of any decent painkillers to help - Co-Codamol didn't even touch it, plus it can only be taken for a few days in case you get addicted!

Life at the moment seems good though. It might not be "perfect", but when is it? I haven't had the dreaded MS hug for a while (spasms in my rib cage muscles - excruciating), and I even have a few trips planned. I think the latter is important, as the last few years have taught me, and last year especially, life is too unpredictable, and you need to squeeze as much enjoyment out of it as you can.

Well, that's it for now, I thought a catch-up blog was apt. Next time though, I will carry on with a blog based on adjusting to the social problems attributed to MS and other disabilities & illnesses.

Ciao for now...

Jo x

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!

Ciao,

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.

Tuesday, 10 September 2013

Knock me down, I'll get back up, there's no other option!

Well, as I have more to write about, here's another blog!

I'm finally over my relapse, but I now have the fatigue to get through, and an eye infection PLUS a cold had also been added to the mix, so more fatigue - oh lucky me eh! Ah well, it could be worse, plenty of rest and hopefully this should sod off. Although now it's September, it means that it's officially Cold & Flu season, so I bet there's many more lovely viruses for me to host over the coming months. Which reminded me to call my Doctors to enquire about my yearly Flu jab (it's usually me and the local elderly people getting their jabs), and the receptionist was pretty clueless. She said: "Erm, ah, well, I think we're doing that at the end of October, so call back then." I said to her that was pretty late, as I usually book it in September, and have it later that month or early the following month, as of course, with me having MS & mild Asthma, the earlier I have the jab, the better chance I have of not getting the Flu. She replied: "Erm...just call back nearer the time." Great, thanks for your help.

In medication related news (the thing I must moan about more than anything else), I went for my appointment in London to be assessed for the Stem Cell trial, but they decided that I wasn't eligible, as most of my symptoms are sensory, so therefore they can't measure them. It was a long day, I left late morning to allow me time to get the trains I needed to, then the bus to Charing Cross hospital, my appointment was late, then there was a fire alarm which didn't help.

The Doctor tested my reflexes, got me to walk without my stick, used a pin prick to see if I felt pain, and even though I have much less sensitivity on my left side, and have trouble walking (due to balance problems and an annoying numb patch on my left leg), they gave me a score of 2 (whatever measuring scale that is on I don't know), and you need at least 3 - 6.5 to be eligible. By the sounds of it, they want people who are pretty much verging on Secondary Progressive, or if you have dodgy bowels and/or bladder - which thankfully I don't.

Needless to say, I was pretty upset afterwards, as I thought I was pretty much on the trial but this was a formality. I decided to get pissed that evening to drown my sorrows, so I met up with a friend, had two pints, before going to a gig in Burgess Hill, where I had a further five pints. The funny thing was I kept dropping my stick, then insisting on trying to pick it up myself, and managed to - the alcohol masked the numbness in my leg, so seemed to help. I'm sure I spoke lots of rubbish, but I had a good night and let off some steam, which was very much needed.

I've come to terms with it now, and need to focus on getting the Gilenya pill medication, and keeping fit. It's amazing the contrast of my fitness to what is was 2 years ago, and 1 year ago, as I went to an introductory Physio Pilates consultation yesterday evening, and I felt sore afterwards, and in comparison to what I used to do at the gym, was nothing! Then again, four relapses (especially one lasting 4 months), can do that to you, I think my body is a bit ravaged.

My aim for the next six months is to be on new medication, loose the walking stick, be fit & healthy, keep my mind sharp (I'm starting the first part of my part-time degree next month), and try and be the best that I can. I can't be as well as I used to be, so getting well and recuperating from what my immune system has thrown at me is the next step, and if we can get Stem-Cell therapy in the next five years, hopefully I'll have a good chance at recovering. Then, I'll be an annoying thirty-something acting like someone in their twenties, I will have time to make up you see!

Well, until next time. Hopefully next time I can blog about how I'm off Rebif, and on Gilenya, however I've been waiting so long, it might be nearer Christmas...let's hope it's nearer.

Jo x

Thursday, 22 August 2013

Much like a twisted sweet shop V.2

Well I thought it was time to write another blog, as I have a few things to write about. The title of the blog is in reference to the variety of symptoms in my current relapse, a mix of everything from the MS Hug (not a hug, a vice-crushing grip on my rip cage, rib cage muscles in spasm, painful, and sore to the touch even afterwards), fatigue, speech problems, balance, memory, numb leg, fiery pins & needles, my collarbone feeling like it's on fire. This is V.2 as I did originally write a blog with this title, but forgot to post it, then posted it, and deleted it as it wasn't relevant anymore at that time. I've been signed off for Two weeks to rest and recover, so fingers crossed this relapse has been nipped in the bud.

Last year I was more prolific with my blog writing, this year not so much. I'm not one to be superstitious, but if I was, I'd be blaming 2013 as 13 is meant to be an unlucky number, and what a crap year it's been for me (I know it could be much worse, but at the same time I don't want to take any comfort in that, as if it's worse for someone else, it's like I'm taking comfort out of their misfortune). As ever, even though life is being an unfair bitch to me, I'm trying to be positive and make good things happen, despite now currently going through another relapse.

This year has been crap as my MS has gotten steadily worse, but is still classed as Highly Active Relapsing-Remitting, which is obviously much better than Secondary Progressive, but not great.

So this year has seen me move out of the house-share, and I was living between my Grandparents (in Littlehampton), and my Parents house (in Brighton), but now I'm living full-time at my Mum's - now there's space for me and my many belongings as my Parents have split up. I'm now officially down to work a four day working week rather than 5, but I've hardly been able to manage that, as aside from the extreme fatigue (which as I'll always reiterate is NOTHING like normal tiredness), my medication has been misbehaving even more than usual. For something which is meant to help me, the Rebif really hasn't - each night I take it I get a racing heartbeat which makes it near impossible to sleep, and when I actually manage to, it's a light sleep with nightmares. Then the next day is guaranteed flu, and of course all of this means that I'm having to take even more days off sick, when I'd just like to be getting on with my life.

I've spoken to my MS nurse in regard to the latter and have asked for a reduction in my dosage from 44mg to 22mg, which I think will make a difference, but in light of my current relapse, they're reluctant to in case it's making some kind of a difference. My opinion is, why take a drug which actually makes my quality of life worse? All I want to do is try and get on with my life in as normal way as I can. With any luck after she's spoken to my Neurologist (who is on long-term sick, and the NHS have only just got their arse into gear and hired someone else to help), then they'll lower it. Thankfully as I'm planning to come off the Rebif soon (for the Gilenya - pill medication for MS, which is much more effective than my current medication), then they may reduce it.

I've decided to take things into my own hands, and have signed up for a medical trial for Stem Cell Therapy. A friend of mine sent me a link to the trial on the NHS website, so all I did was email the Doctor in charge of the trial, and I have an appointment to be assessed in early September. If they decide that I meet the criteria for the trial, then I could be starting the trial as early as late September to early October. The trial lasts for a year, and you're guaranteed to get the stem cell therapy in the trial. You either get the treatment in the first six months of the trial, then the placebo in the last six months of the trial or vice versa. This all depends if the cells that they harvest from my hip bone actually grow (I think this can take 8-10 weeks).

This trial is looking at administering by an infusion, much like the way they use to administer Chemo rather than in the style of an epidural, like they have been doing. I haven't mentioned anything to my MS nurse yet, as I haven't actually been properly assessed and nothing has been confirmed. If I don't get on the trial, then I should be on the Gilenya by the end of the year. Either way, I hope that this time next year things may be very different!

I've joked with friends that if I get much better due to the trial, as I've missed out on a lot in my Twenties, I'll be acting like a Twenty something in my Thirties, but I guess it's better than acting like an overgrown teenager.

I've got used to how I have to live now, even using my walking stick most of the time (when I have good days I try not to use it so I don't always rely on it, which doesn't always work out, so I have a fold up one to keep in my bag!) I know I can't socialise like I used to, which was probably most of the week, as well as working, and being in a band, just taking each day as it comes is how I live now. I do cancel on people a lot, but those I make plans with seem to understand, and still make plans with me again. I do have moments where I feel like I'm missing out, especially on Facebook with everyone getting in relationships, getting engaged, getting married, going travelling, or just going out on a Friday night, but I'm not bitter, I've had plenty of fun, and there is plenty more to be had (just with more rest in between!)

My blogs will probably get less and less as I'm starting the first Sixty credits of my degree in October, but I'll try and fit in a few more this year.

Ciao for now.

Jo xx

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

Saturday, 27 April 2013

Blah...

I guess my blogs are getting less and less lately, but I might have mentioned before that I don't want to repeat myself too much. This time I have something to write about - it might sound self pitying, however I'm telling it as it is, and how I feel. (I am well aware of someone else on this planet having worse problems with me, and even with those people, someone else will be worse off. If you have a problem, you're entitled to be pissed off...)

I had a relapse from December - April, and now I have a bad bout of MS fatigue, which actually makes me prefer the relapse, and I've never known tiredness like it. In fact, I find it scary how much I can sleep and I still feel tired.

This time it was worsening of old symptoms more than anything, like cluster headaches, memory, balance and speech problems, and hand spasms. I've taken a large amount of time off work, and have been signed off for the past two weeks. My Physiotherapist gave me a walking stick (one for each side, depending on which side I need it), this is to help with my balance problems, and I'm now going to be working 4 days a week. I know I need to work part-time, however I feel like me working hard the past two years and going one step forward, I'm now going five steps backwards.

I'm going to be Twenty Six on Monday, and I feel like I'm Eighty Six. I want to be going out with my friends, having fun, being carefree, however I've had to refuse many social invitations this year because I'm unwell, which at first made me feel like a flake, but my friends understand so it stops me from worrying (although if anyone stopped being my friend because of my MS, then what would be point of being friends?)

Anyway, enough of moaning from me, things could be worse, but it's making me re-evaluate my life and what I want to do - life is too short. Number one on the list, trying to get more writing work, so I could eventually write for a living one day. I'm starting to feel ever so slightly better than I was two weeks ago, so I need to remember that if I keep on resting (more than usual), the fatigue may be back to normal soon (still exhausting me, but meaning I can have a nap to quench it, rather than sleeping for 13 hours).

Until next time...

Jo

Thursday, 7 February 2013

The final cut...maybe

My indecisiveness has made my blog pretty quiet for the past four months. I did put two posts on, one of which I realised I hadn't published by mistake, but as they were in the wrong order, I deleted them, and didn't bother putting them in the right order. Oh well.

Plus, even though I have an unfortunate theme for my blog, and I've made it a "Dear Diary..." regarding my MS, and it'd be odd to suddenly start writing about my dinner, and chores around the house (why would I, unless I really did want to bore whomever decides to read this), I did get a bit bored of writing about MS. I figured I was maybe getting a bit repetitive.

So maybe a slight hiatus is a good thing.

I still am experiencing a relapse, which my MS nurse tried to comfort me by saying: "It's mainly sensory though, so not too much to worry about", oh, okay then, that's good...oh these fiery pins and needles shooting up and down both legs, and on my face, is just lovely! Not to mention my goldfish memory, jumbling of speech, dizziness, fatigue, hand spasms, occasional weird eye pain/swelling, and indescribable headaches.

I'm sure she didn't mean to trivialise my symptoms, and she probably meant at least I'm still able to walk (which of course I'm happy for, although sometimes I'm so dizzy I can't actually get up and walk), but it did irk me slightly, never mind though eh.

Despite this, I've decided to start an Open Uni course, hopefully going towards a degree, and thankfully it has a big time-frame in which to complete a degree (anything from three to sixteen years, although I'm aiming to do it part-time over 6-7 years).

I'll be out of the house-share in a few weeks, which I was blogging about so keenly last year, it's crazy how quickly the year has passed. Staying with family, saving up, hopefully getting a flat to myself in June/July time.

Anyway, this is a bit of a nothing post, just so I can say I have my first blog post for 2013. Once I can think of something else, I'll write another.

Jo

Wednesday, 3 October 2012

Philosophising, etc...

So, this year has been even more of a "becoming", "growing up experience" kind of year for me.

It's been just over a year since my diagnosis, and I think now I've come to terms with MS as much as possible. When feeling my worst, I do think there are others worse off than me, and give myself a little telling off for any slight self-pity (no shouting at myself in the mirror, don't worry, I haven't totally lost it yet).

I still maintain that myself and others in similar, worse or even seemingly not as bad situations, have a right to be pissed off regardless. Being pissed off comes more from uncertainty and feeling like I'm being slowed down, when I should be speeding up and enjoying life while I can.

My MS nurse confirmed what I was already thinking, that my MS is more active. The pro, now I'm passed the time period of getting used to my medication, having a relapse means I am now technically eligible for the pill medication. If they did decide to allow me this, it would start off being monitored in hospital for a day, as it can slow my heart rate down (my current one speeds up my heart rate, making me have several "falling and crashing down on the bed" dreams each evening I take the medication), but this medication is apparently more effective. The cons? Highly active Relapsing-Remitting MS? It might sound worse than it could end up being - it might stay the same and not get any worse...who knows.

The uncertainty eats away at me, but if tomorrow I was told with some certainty that things were worse, that would hurt even more (despite it being certain), so I try to keep busy rather than think about it too much. I put on a front, don't break down in front of friends or family, I'd rather be trying to enjoy life as much as I can, as you don't know when it could be cut short.

I'm still trying to get a band together (a practice soon might happen), and revising for my financial exam at work, while still trying to have a creative outlet in music journo writing, but am too tired to do all well at the moment (even if I was well, it'd be a mean feat). This year more than ever, has shown me who matters in my life, before I was ill, I was never a flake, if there was 2 bands I wanted to see in one night, I'd go to both, see as many of my friends as possible. Now, I make arrangements, and often cancel at the last minute, only due to my health - as one minute, I can feel well, the next, full of fatigue and unable to do anything but sleep (for someone that used to say "sleep is for the afterlife - aside from weekend lie ins", it feels crap doing that - but if you have your health you have nothing).

I mentioned in an earlier blog about a friend of mine which sadly passed away, which gave me a kick up the arse to catch up with those I could & try to get a band together, after a couple of months, I realise my fatigue is getting in the way, despite my trying.

Anyway, we hadn't hung out properly in a couple of years, but would always see him around Brighton & on the bus, our last conversation was: "We should meet up for a drink soon." This didn't happen, but I had a dream a few weeks ago, where we were at a house party, having a chat on someones sofa, sharing a bottle of cider, I asked what he was doing here, and he said he was just saying hello, not goodbye, and said "see you later" to everyone. It got me thinking, I don't need to catch up with absolutely everyone I know "just in case", it's not possible, life is life, treasure the memories and the good times - even the good times with those who you might not be friends with now for whatever reason (they all contribute to who we are).

Anyway, a few pints of organic cider as made me more philosophical than usual, so off to bed with me.

Ciao xx

Wednesday, 12 September 2012

Blah

Apologies for the unimaginative title, I'm not feeling particularly inspired today, but feel like writing something.

I've been trying for the past few months to work through as much tiredness as possible (sometimes failing, and waking up with my revision book on my face - true story), so I live my life, rather than just purely survive.

Forming a band has hit a brick wall, as it's seemingly impossible to find a good drummer, which isn't in five other bands or more! I do have two new leads though, so my aim is now to have had a jam with this band by November.

Writing wise, I'm now writing music reviews and a monthly blog for Uber Rock (http://www.uberrock.co.uk/features/84-september-features/5936-no-sugarcoating-a-no-bullshit-september.html) The blog is music related, in some way, obviously, take a peek if you like.

To try and progress at work, I've decided to study for and take my first financial exam in November (being crap at maths, I never thought I would be taking a financial exam!)

Most importantly, for fun, next year I'm hoping to go to Glastonbury, and a big trip to America/Canada/New Zealand at the end of 2013, to Jan 2014, which means working overtime (if my fatigue allows it) to save up a good few grand. Of course, if I win the lottery anytime soon, I'll buy a round the world ticket in an instant, buy a desert island, write to my hearts content, build a recording studio & hire a drummer! However, I think the latter is very unlikely...

xx

Thursday, 30 August 2012

Just like clockwork...

So my last blog I was in fact describing a relapse, which I thought I'd managed to bypass, but unfortunately not, although "the peak" as I will call it, lasted less than a week.

"The Peak" for me means when I get the worse symptoms, then the fatigue kicks in...big time. The cluster headaches will not subside though, and it feels like a sharp, stabbing pain behind my eye. I'm not going to assume this is just because of MS though, I can't blame every health affliction on MS, so I plan on seeing a doctor to make sure it's nothing else! (Hopefully nothing worse!)

I nearly lost total use of my left hand last week, something new. One hand was numb and having spasms, and the other was just spasm-ing (not a word, but hey, the English language is always changing...)

But yes, this relapse is "just like clockwork", as I seem to get ill gradually from June/July/August, relapsing, then lasting through to some point in September/October. This is the one time I don't like something being on time...

The plus side? Maybe the PCT will allow me the pill medication (maybe even some Sativex for the strange neurological sensations...unlikely though).

xx

Wednesday, 15 August 2012

Dumbing it down

The dust has settled, the meds have had time to work their magic, and I've used two cliches in my first sentence.

Essentially, I'm on a level playing field (another one), where I'm not overly unwell, yet I wouldn't say I feel great. I feel happier and slightly energetic on a daily basis now, especially as I've got used to my injections (hello bruises), and got used to having MS. If it's possible I'm so levelled out, I nearly need reminding that I have MS (not really, but it isn't constantly on my mind any more).

The fatigue is still my main obstacle, along with my speech, coordination, concentration and...um...memory. The fatigue, on a particularly bad day (sometimes worse after my medication), makes the latter symptoms even worse. Which I'm sure I have mentioned before (my memory isn't THAT bad).

Anyway, I think I'm relapsing, but the symptoms feel dumbed down somewhat. Granted, I'm shattered, I keep walking into things, tripping up, having hand spasms and dropping things, cluster headaches, and some optic neuritis pain thrown in, but it feels numb in comparison to my last relapse (reference my angry blog from March). Usually I won't be able to get out of bed for at least a week, however I have been making it in to work so far this week, which to me, is a big achievement, and makes me feel tentatively happy.

Little things like that help me continue with my PMA (Positive Mental Attitude), which has helped me through coping with my diagnosis. I do realise I am actually lucky in comparison to other people, and things could be worse off for me.

So, Rebif might be working a bit for me...but if this does prove to be a relapse, I may qualify for the pill medication, which would be fantastic, but you never know. For now, I shall take it easy and sleep plenty this weekend.

Here is a video featuring a friend of mine, raising awareness for MS: http://www.mssociety.org.uk/shana

xx