Time for me to start updating this again. But rather than lengthy streams of consciousness I’m aiming for shorter but more regular blogs in the hope I actually generate something worthwhile without gigantic gaps of silence in between each instalment.

 

 

 

So in the last year I’ve adopted a dog, become a manager of a team of 12 engineers, got married to the best person on the planet (in my opinion) and had a lovely honeymoon (both on the cheap). I’ve also spent more sleepless nights than I would like worrying about money and the future. Out of all of those things, adopting the dog is the only one that hasn’t been stressful to a lesser or greater degree. I’m paying the price right now MS-wise as my energy levels have plummeted for the last month and I struggle to do much outside of turning up for work and dealing with all the challenges my job throws my way each shift. The tough part for me is that it’s not physical tiredness, it’s fatigue and it’s like my brain is made of custard and my eyelids are made of lead. It is so hard to describe and quantify to people who have never experienced it. For example, If I’m on my own and hungry I’ll likely stay that way because the mental effort required to think about the mechanics of getting my arse off the sofa, not colliding with anything on the way to the kitchen, keeping my balance and not dropping anything just to prepare even a sandwich is too much to handle. So I stay sat down and hungry. It sounds like laziness but it really isn’t.

But I’ve had it much worse than this and come back from it before, so I fret about it in the back of my mind but hope it won’t last forever this time. Most importantly I’m very happy, and that helps the MS as much as being stressed exacerbates it. Plus, the dog is a total lazybones and keeps me company when I have many snoozes on my days off. It’s always good to have a mate with you when you’re feeling a bit pants.

So I deal with the fatigue as well as I know how. I exercise as much as I can. I walk 3 miles a day to and from the station when I’m on shift and I’m back up to being able to run 5k at a time, which I try to do twice a week. It’s hard to get going but once I do the adrenaline rush wakes me up for a few hours and I feel almost normal again, and that makes it very rewarding. I can also eat more food without getting fat, which also makes it very rewarding because I like food an awful lot. The dog keeps me company on the runs as well as the snoozes, although he does at least twice the distance I do with five times the energy. I hope at some point to get him a small GPS tracker and a Runkeeper account just to see how much distance the little sucker actually covers with such ease while I thud along gamely. He even has the audacity to look happy about it, the git. Sometimes if we go to the forest Spooner comes along on his bike to hit the trails while I plod and wheeze along and the dog zips around excitedly searching for Spooner when he disappears from view, and those runs where the three of us are there are my favourites.

 

 

 

I’m currently on night shifts and yesterday morning after my shift as I was walking to Charing Cross station from Oxford Circus where I work, all the familiar unwelcome symptoms of “tired me” reared their head. My legs feel like an electric current is running down the back of them, my feet have permanent pins and needles as I walk and I go from my normal smooth and speedy trundle to a jerkier and ungainly gait. Still quite speedy though, I want to get to that train home to the promised land of bed as quickly as possible. Drop-foot kicks in and once or twice I’ll really catch my foot and stumble. My sense of balance, precarious at the best of times, becomes even worse and I know that to the other early-morning occupants of Leicester Square I look like I’m still wasted from the night before and doing the walk of shame to get the train home. If only that were the case. As I reach St Martin-in-the-Fields, tunnel vision is starting to set in, my least favourite part of this little routine. I stop to cross the road opposite Charing Cross and my vision clears, which makes it even more difficult to motivate myself across the road when the green man appears. I force myself on buzzing jelly legs to the entrance of the station, only to realise with immeasurable joy that this weekend is one where Charing Cross is closed because of engineering work and my trains are leaving from Cannon Street, over a mile away along the Thames. The tube at Embankment is less than 5 minutes walk but I very seriously consider just lying on the concourse for an hour or two before continuing. Surely only the pigeons will be there when there’s no trains running, and they won’t mind….

It’s been a long old time since my last post. I have reasons – I went on holiday and then I was ill. Other stuff happened besides that, but a blow-by-blow account of my daily life isn’t why I write this stuff. It’s still a long post though. Sorry!

I saw my MS nurse back in October about getting started on a new “preventative” medication. As the type of MS I suffer from is called Relapsing Remitting it means that it (hopefully) responds to a group of medications known as Disease Modifying Therapies (DMTs or DMDs). These medications aren’t a cure or a treatment for symptoms, but a way of trying to prevent the cause and severity of relapses. When I was diagnosed in 2003 they were a very new thing and a patient had to fit a certain criteria to be eligible for them. I was lucky enough to fit that criteria and had three options to choose from. All involved self-injection of varying frequencies, and different side effects. As I wanted to carry on working I chose Copaxone, which required a daily injection but less debilitating symptoms. Apart from the odd hiccup we got on very well, but after 11 years I was fed up of injecting myself every day, and the fatty layer beneath my skin was starting to deteriorate from the frequent injections. I’ll have large dents on my thighs and the backs of arms forever, no matter how much cake I eat the fat won’t come back in those areas. It’s a crime that I can’t fix even a small part of this crappy disease with cake. The syringes also had to be kept in a strict temperature range, which caused plenty of hassle when travelling, camping and going on flights. So it would be an understatement to say that I was ready to give up injecting myself every morning. My neurologist had agreed I could switch to Tecfidera, which had showed to be more effective than Copaxone in trials, and the most important part – is administered via a tablet!

I went into the appointment with my nurse feeling very optimistic and also a little excited, as sad as it may seem. Tecfidera comes with different side effects to Copaxone, and I was prepared to deal with those for the convenience of taking a tablet over injecting. What I had forgotten about was the thing my brain does when I spend too much time thinking about MS, and my brain started doing its thing over the next few days while I digested the info about my new medication. Something about reading the friendly but matter-of-fact tone in the information sheets for medication or MS suddenly makes it real and I have a mini-meltdown. It’s strange because I live with quite a few daily symptoms, it’s not as if I don’t have a constant reminder that my immune system is slowly dissolving my internal electrics. But reading those oh-so-reassuringly-written booklets tips me over the edge every time. The list of possible side effects is the trigger this time. I get scared, a sense of panic creeps in. The train of thought goes something like this:
I don’t want to feel ill! I don’t like taking all these weird chemicals.
What am I doing to myself? This stuff is poison.
I’m giving myself cancer/kidney damage/liver failure by taking this thing nobody knows much about.
My body is falling apart. I’m not even 40.
Healthy people have no idea how lucky they are.
Why am I so ill?
I feel awful every day. I hate it. I can’t take it any more.
My poor body, how much more can it take?
The risk of fatal side effects are tiny but I know my luck, I’ll be the one in ten thousand who dies.
I just want to hide under a duvet, shut the world out and wait for it all to go away.
I can’t talk to anyone about this, they don’t understand.
I wish I was normal.
WHY ME? Why did I develop this idiotic condition? I’ve been ill my whole adult life. It’s not fair.

It always comes back to “Why Me?” and “It’s not Fair”. They are stupid, futile thoughts to have. Everyone has obstacles they have to overcome in life. Everyone has problems. One of mine is MS. Nothing I can do about it, and there’s nothing I or anyone else could have done would have prevented me from getting it.  I’m a control freak, and I know that part of the panic is my perceived loss of control. We like to think we’re in charge of our bodies, but the reality is that our brains are just very good at fooling us into thinking we’re the boss. We’re not at all. Nevertheless, the end of the line for this little dance my mind does every so often leaves me feeling battered, exhausted and an emotional wreck for a week or so. I feel delicate, as if my body will crumble to pieces at the slightest thing. The urge to hide away from everyone and everything is very strong and my confidence deserts me. I function, I get through each day, but I don’t feel there’s much point in doing anything. It eventually passes. It always does, but knowing that doesn’t stop it from happening in the first place.

The trigger for my little pity party in this particular instance is a very, very rare side effect of Tecfidera. Most of us have a virus in our system called JCV (John Cunningham virus). This virus is kept dormant by our immune systems and is therefore harmless. But in very rare cases where people are taking immuno-modifying drugs the virus can become active and cause Progressive Multifocal Leukoencephalopathy . For obvious reasons this is normally shortened to PML. Now the irony that I, the queen of toilet humour am now more susceptible than most of the population to a disease called PML is not lost on me. But it’s pretty nasty, can be fatal and it scared the bejesus out of me. But I’m also an engineer. I know the odds of developing it are microscopic, and I’m monitored for it through regular blood tests, along with low levels of lymphocytes and abnormal liver function. I have to force my practical brain to overcome my panic brain, and stuff it back in the box it lives in.

Anyway, enough rambling about my ever-fragile grip on sanity. I started taking the meds in mid-November. I took advice from my nurse on diet to help with the gastric problems and joined a support group on Facebook for people taking Tecfidera. I suffered some initial side effects. They weren’t altogether pleasant, but they lessened over time. The one that stays with everyone is flushing. It’s like a blush, but absolutely everywhere. I can feel my face, ears and the back of my neck burning. My skin prickles and I go bright red all over. Everywhere. My fella Sean has dubbed it “going tomart” in reference to the fact I look like a tomato. It can last up to half an hour, and one time happened while I was sleeping. The resulting raise in body temperature while I was snugly wrapped in a big duvet caused me to have a night terror, complete with that weird wailing noise you make when you’re trying to scream in a dream. Unfortunately I was having a girly weekend with my friend and she was sleeping in the next room. She’s very understanding, but I’m sorry, Gail. I know it must have been freaky as anything to be woken by that. Apart from the flushes, everything is now trouble-free. I can take going bright red every other day. It’s still better than injections.

But has this new fancy drug had any effect? Well….after a few weeks I noticed that my energy levels were vastly improved. The ever-present fatigue was going away. I was doing things after a day at work that I haven’t been able to manage for years. Tidying up, holding conversations, general chores that would normally have to wait for a day off. I was still tired at the end of the day, but it was “normal person” tired. I remembered how it felt from many years ago. It was great! This new drug is magic, it was somehow helping with my symptoms! Sadly, I was then promptly struck down with a chest infection. I think the last time I was that ill was when I has suspected meningitis (thankfully just nasty flu) when I was about 11. I was completely knocked down for 2 weeks. December just didn’t happen. I sent no Christmas cards, I was back to just existing. I made it back to work on December 18th. Christmas came and went without me really noticing or feeling it, I was too ill to travel to see any friends or family, and seeing the people I love is what makes Christmas for me. Now, with New Year’s Eve just a day away, I’m just about starting to feel more human again. After a reminder that I can’t just shake illnesses off that panicky train of thought has been waiting in the station in my brain again, but this time I’m determined not to get on. I’m seeing in the new year with some wonderful people and I actually feel like having fun. New Year, hopefully new thought processes. Fingers crossed!

Have a wonderful, happy and fun-filled 2016. Thanks for reading my rambling brain dumps. It helps me to write this stuff down 🙂

It’s been a little more than 2 weeks since I started on the Vitamin D, but the last 10 days were very hectic so I’ve only just found the time to sit down and write something coherent.

Since starting on the vitamin D tablets as mentioned in my last post I’ve had a lot going on. I did some nights shifts, I spent 4 days living out of my camper van at the Great Dorset Steam Fair, I squeezed in a 5k run and some serious music geekery with a friend and then another day of work in London before shooting back off to Wiltshire via Dorset to support my lovely fella as he rode in the Vets Motocross des Nations. That involved 3 days in a tent and then a kamikaze train journey from Wiltshire back to London in time to grab a flight to Verona to do a day of sightseeing and see the brilliant David Gilmour play at the beautiful Verona arena. The Lamberti Tower is where I got the photo above, just to prove I’m still smiling and not an exhausted husk of a human being. It was back to London first thing the next morning in time for a few hours of recovery time before going back to work on Wednesday. Occasionally I don’t make life easy for myself, but it’s almost always fun 🙂

So apart from doing my best to exhaust myself I’ve somehow managed to take the vitamin D tablets every day except for one – that was the day I arrived back from Verona. My way of dealing with the cognitive problems caused by MS is to be a creature of habit. It works well for me and ensures that I (usually) take medication, remember where I need to be and don’t lose things. As soon as something throws that routine out then all bets are off and I put stuff in stupid places and forget appointments and medication. I’m sure everyone can relate to that to some extent but I can promise you that the gaping chasm of confusion and inability to process even simple things that MS causes is far worse than everyone’s daily scatterbrained actions caused by being too busy. Even though I have been taking Copaxone injections every day for 11 years now it only takes a small change in my routine for me to completely forget to take a dose. Bearing that in mind, I’m pretty pleased that I have so far only forgotten to take the vitamin D on one day. But has it made any difference? So far, it’s difficult to tell because I haven’t been doing my normal day-to-day things recently. But what I can say is that I’ve felt generally less fatigued than usual, and the tightness and stiffness in my left hamstring has disappeared completely. As I mentioned in my previous post, that tightness had been around for ten days or so with no improvement despite doing regular stretches. It hung around for another week and then disappeared almost overnight. I have certainly been tired quite a lot from time to time due to the rushing about, but that’s different to fatigue and in general I’ve felt pretty good compared to the norm over the previous couple of months. There may be other factors at work – the shifts for my new job are undoubtedly still having a positive effect, and doing so many fun things has also boosted my general happiness which always has a physical effect as well. I will keep on with it and keep noting any effect both positive and negative.

Apart from that there isn’t much to add. I have been offered a 6-month fixed-term role in my job so I will get perks such as holiday pay and sick pay. No word yet on when that will start but it will be nice to take some time off without worrying about losing money, so I hope it happens soon. Less worry and more time off is always good! Talking of worrying about money, a trip to LA to visit some wonderful friends is the next big thing looming in the middle of October. I hope it’s possible get something cheap like pot noodles in LA because I’ll need to spend as little as possible. Eeek!

Thanks for reading 🙂
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So after my first blog ages ago I have been a bit swamped with stuff in the real world, mainly changing jobs and all the admin that comes with doing that when you’re a contractor. I’ve also been adjusting to new shifts which has actually worked out much better for me; I get more time to rest and more time at home while still doing the same hours at work over the course of a month. Doing longer days but having more days off really works for me. I feel more human than I have for a very long time!

So, on to the main reason for this blog post. Following an exchange with a friend earlier this week regarding the relationship between vitamin D levels and MS I’ve decided that I’m going to start taking a vitamin D supplement again. I took a daily supplement a few years ago but my life was in a bit of turmoil at the time and I couldn’t say whether it had any positive impact on how I felt or the behaviour of my MS. It certainly didn’t seem to have a negative one. So I’m going to start again and try to be a bit more organised in noting any effects.

So, today is the 29th of August. I’m going to start taking 25µg of vitamin D3 in the form of one tablet per day. This may not be the best dosage, I’m going to do some further research and seek some advice and adjust the dosage if necessary. Both the UK MS Society and MS Trust say that there’s no conclusive information on an effective dosage of Vitamin D for MS patients. As someone who works long hours indoors and frequent night shifts I certainly don’t get as much daylight exposure as I should. Outside of work I do spend a lot of time outdoors, camping, walking and running but I burn very easily in the sun, meaning that when I am outdoors I cover up quite a bit with hats, scarves and sunblock. This probably doesn’t help matters.

So, my symptoms today are:

• Numbness/paraesthesia on the soles of both of my feet. This has been a permanent fixture for the last 5 years or so. It varies in severity but is always present to some extent.
• Numbness in the tip of my thumb and forefinger of my left hand. As above, the intensity varies but it’s always there.
• Tightness/spasms in the hamstring on my left leg. This has been there about ten days, I think it was caused by not stretching properly after a run (naughty of me but I was in a rush!) but the MS is making it linger.
• Fatigue. This is another constant that again varies from day to day. Today isn’t a great day, I am feeling pretty wiped out. Not physically, but my eyes just want to close the whole time and my brain feels foggy.MS is different for each and every sufferer, and every day is different for each person. This is just really a daft experiment for me to do for my own amusement and curiosity.One final thing, I’ve signed up to do MS Walk on September 27th. It’s a 20km walk through London to raise money for the MS society. I’m hoping my 5k runs a couple of times a week will be enough to get me prepared for it! I have a JustGiving page here if anyone is interested in donating.

  Thanks for reading 🙂
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So….I wonder how I’ll start this?

Firstly, hello! Thanks for reading my blog. I hope to achieve two things with it – mainly I hope to be a help to other people living with MS. I also hope to help myself a bit by having somewhere to empty my brain and organise my thoughts on living with this strange, unpredictable, incurable illness.

A little bit about myself; I’m Melly, I’m a broadcast engineer, I’m currently 37 years old and I was diagnosed with Multiple Sclerosis when I was 25, after 4 or 5 years of medical investigations into various symptoms I was experiencing. So really, I’ve lived with MS for all of my adult life. I’m in the UK so I am treated through the wonderful thing that is the NHS. I’ve also moved around a bit over the last couple of years so have experienced the differences in care that is available for people with MS in different areas of the country. I don’t have kids and I live with a very lovely fella who seems to think I’m awesome despite all my flaws.

What really made me want to start this blog was a realisation that maybe my situation could be a comfort to other people with MS. I’ll try to explain – since my diagnosis in 2003 I have continued to work full-time (with one 6-month exception that will get covered in a later post), I also snowboard, I run several times a week, I have an active social life and I restore and go on adventures in my vintage camper van. I’m more active and in better physical shape now than before I was diagnosed, and this week it hit me that maybe I should be proud of that. I’m not saying that I am on top of the world, symptom-free and laughing every single day. There’s no feeling in the soles of my feet and hasn’t been for the past 5 years. 7 years ago one of the muscles in my left leg stopped working for a month. The thumb and forefinger on my left hand have virtually no sensation in them. Balance is a skill I said goodbye to many years ago. Cognition and emotions can be a real hurdle sometimes and every single day I am completely, totally and utterly KNACKERED. But I enjoy life, I love my job and I have to admit that some part of me relishes this challenge that my malfunctioning immune system has set me. I refuse to let it get the better of me. Little obstacles keep getting thrown in my path and I have to adjust my life and behaviour to get around them, but not once yet has it managed to knock me down and keep me there. I keep bouncing back and I feel stronger in my head every time that I do. I know that I’m lucky, I know that my symptoms could be so much more severe and I could be in a much worse situation physically. But rather than focusing on the negative I want to do a blog that shows someone getting the better of MS, fighting back, looking at it with a sense of humour and coming out on top.

Someone I was with when I was diagnosed hated me talking about MS. They said it was boring, it was all I talked about and that no-one wanted to hear about it except me. I did mention it often to start off with, but I was trying to process it all in my head. I took the comments on board and never mentioned it, never said how hopeless it could make me feel, how downright scary it is and how utterly fed-up I could feel with my own useless body. Looking back now I don’t want anyone else to ever feel like they can’t say those things without boring people. Talking about it helps you put things in perspective, makes you realise things you couldn’t quite connect when the thoughts were only in your head. My last intention is to whine on and bore anyone, but it is something that needs to be talked about. Feeling scared of your own body isn’t something anyone should have to experience but sadly many people do, and sharing fears always helps make those fears seem more manageable. No-one should feel alone. Focusing on MS all the time isn’t healthy, but neither is bottling everything up. There’s a happy medium!

I hope you enjoy reading the blog, I aim to update it at least once a week. Feel free to comment, I’d love to hear from you.

Keep smiling!

Melly <{{{><