I’m not a doctor, and, if you are reading this hoping for a definitive and physiologically accurate medical description, then please look for something written by a professional.
When I was told I had got multiple sclerosis, I had absolutely no idea what it was, although I had heard the name and knew it wasn’t something you would want for Christmas.
After reading about it, I developed a picture of it that resembled the electrical wiring in a house. The house is your body, the wiring is the nervous system, that turns things on and off.
The wires in a cable, that conduct the electricity, are, in your case, carrying electrical messages from your brain. There are millions of such wires, and millions of messages travel along them every second. Just as the wires in your house have to be insulated in a plastic casing, to prevent short-circuits, explosions and fires, so your nerves are insulated in what is called the myelin sheath, for the same reason, really.
It is not completely clear at the moment, but it would seem that, in people with MS, the body’s immune system thinks this myelin sheath is an alien object. It doesn’t recognise that it is part of you, so it attacks it, for that is its job, to destroy things in your body that shouldn’t be there.
Exactly why my immune system can’t tell the difference between my myelin sheath and, say, a cancer cell or a flu virus, is not fully understood. I suspect my DNA, so maybe the electrician who wired my house was a bit of a cowboy.
Years later, I discovered my dad’s grandfather died with it (it was called Disseminated Sclerosis then), so my DNA supposition might have been right.
It didn’t help me to discover this, but it is interesting.
Some people with MS are obsessed with finding out why they got it. I’m not sure it helps to know. Maybe it’s to do with vitamin D deficiency, or a rogue gene passed down from the Vikings, or maybe it’s something coming out of our electrical sockets. I have heard all these theories seriously propounded. It doesn’t help
You’ve still got it.
When your immune system is shot to pieces, it doesn’t seem to know what it’s doing, so, after it has attacked your myelin sheath (a process known as demyelination), it then decides to repair the damage, in the way that a normal system would do. So it repairs the damage, but it leaves a scar on the myelin.
This is why people with MS have relapses and remissions. When the immune system is attacking the myelin sheath, I am having a relapse. When it repairs the damage it has itself caused, I am in remission.
Each repair job leaves another scar, and, as time wears on, the scarring becomes so bad that messages just don’t get through to the desired muscles, and things like legs and fingers stop working properly, or stop working altogether.
The attacks and repairs are unpredictable, and the effects of slow or random messaging are excitingly challenging!
But, you’ve still got it.
It has moved in to your house, like an unwanted and drug-crazed teenager, and you can’t throw it out, even though it leaves its dirty underwear on the kitchen floor and just uses you like a hotel, coming and going just as it wants to. It will eat you out of house and home.
But, try to understand it. You’ll have to put up with its loud music and untidy bedroom. You might as well learn to live with it, although you’ll never learn to love it.
Love it or not, accept it or not, know why it’s chosen you, or not, it makes no difference. You’ve still got it.
I have no medical qualifications. I can only talk about multiple sclerosis because I’ve got it. I must stress that my body is not yours, and my MS is mine alone. However, this is the advice I gave myself, and so far, 26 years later, I wouldn’t change any of these ten suggestions.
If you want, show this plan of action to your GP, and if she says it’s crazy, go back to watching daytime TV and wait for the cure (which, by the way, they’re unlikely to find in your lifetime, and if they do, you won’t be a priority to receive it by then).
This, then, is the list. It will not cure you. At present, it is incurable – don’t let the internet tell you otherwise. Don’t buy snake venom! It is poisonous. The clue is in the name.
Because there is a lot to write about these suggestions, I will devote a separate post to each of them. Looking through them, I don’t think they only apply to MS. Who knows, maybe this is the start of a whole new philosophy of life? Watch this space . . .
- Get a medical team behind you.
- Keep eating but keep light.
- Keep moving.
- Keep thinking.
- Keep feeling.
- Keep your friends.
- Keep growing.
- Get connected.
- Say hello to the world.
- Keep planning.
Get yourself a medical team. Some people are afraid of getting the diagnosis, and doctors are reluctant to give it because it’s notoriously difficult to diagnose, and impossible to give a prognosis. Your MS is your MS, and is different to everybody else’s. Get to know. Become an expert in your own illness.
Get a neurologist, but don’t expect her to cure you. But, if you are officially on her books, she can open doors for you, with regard to benefits, blue badges, medical trials, and, when they find the magic bullet, it will be a good idea to be on an official list of those who need curing!
Find out about MSn services in your area. Yoyu can get access to specialist nurses, physiotherapy, hydrotherapy, dietary advice, and a ssocial worker. Use these people. Sometimes, they can help you. Don’t forget to make friends with your GP, but only bother her when it’s serious and when it can’t be dealt with by a cup of tea and a chat with a friend.
Your medical support team is, or could be, very important. Treasure it.
Keep eating, but stay light. This applies to nearly everyone in the western world, but Particularly to you if you’ve got MS.
Food is for pleasure as well as fuel. Don’t use it to punish yourself . You are being punished enough already, if it’s punishment that turns you on.
There are some broad guidelines designed to strengthen the myelin sheath, immune system and general health.
Don’t give anything up you like, just eat less of it. Smaller portions, no seconds, not every day, that sort of thing. No need to turn veggie, just cut right down on meat. We all eat far too much of it, anyway. You can’t eat too many vegetables. Cram them in.
Reduce saturated fats, which are the fats that solidify at room temperature, like butter, cream, cheese, lard. Wherever possible, go for freshly cooked food, rather than convenience meals, and go for fish rather than meat.
None of this means you should give up chocolates or cakes. To go to the extreme of giving things up is either hysterical or histrionic. And you’ll probably fail. Everything in moderation, remembering that, as a species, we are omnivores.
Nearly everything else is food industry hype, mystification and marketing.
Watch your weight. Every pound you put on is an extra pound your legs have to carry. Care for your legs, give them a break, lose weight. But, again, don’t obsess about it. Just cut down on the quantities. Instead of two doughnuts, have one. Simples!
Keep moving. This means you, not just somebody, you, M S or not. Even if you don’t give a flying crap about M S, keep moving. Don’t wait for the wheelchair, or, if you’re in a wheelchair, don’t wait for the bed. Or, if you’re in bed, don’t wait for death. It’s not like going to Derby for the week-end, as my gran used to say.
At first, young and recently diagnosed, you might go to the gym. I suppose someone does. But you don’t need to torture yourself. Just do more today than you did yesterday. Go for a swim, ride a tricycle or share a tandem, get a dog so you have to go for a walk every day, play a piano to keep your fingers moving, dance in your wheelchair, make love, get someone to move your legs and arms up and down in bed till you get breathless, go to a show and laugh till you are weeping and rolling around on the floor, tap your foot to music. Ride a horse, do disabled winter sports, go fishing or bird watching.
Honestly, it doesn’t matter what you do. It’s not likely that you’ll be strong enough to cause yourself a sports injury.Just move something, and then tomorrow move it some more.
Don’t wait for death.
And, while you’re about it, the grass doesn’t cut itself, you know.
Keep Thinking. Because you have a lot of myelin in your brain, it is often the organ to be most affected by the M S. Fortunately, because there are so many neural connections, and because the brain is amazingly plastic and adaptable, it is also not always apparent to you that anything is happening in it.
Probably the only thing you’ll notice is the fatigue that makes thinking such hard work when you’re tired. After a while you’ll get used to your own fatigue patterns, and you’ll know when not to use complicated heavy machinery like a washing machine, and when and whether to go to parties.
But, just as with other muscles, you’ve got to exercise your brain. The old adage of “use it or lose it” applies here too.
Do what you can and what you enjoy. Read a lot – it’s one way of going to places and doing things you can’t physically do. Avoid mind-numbing things like daytime television, getting drunk (you’ll be falling over, anyway), and narcotics.
Even in bed, you can play games and do puzzles and crosswords. Write a blog (!), or decide to take politics and voting seriously. Leave a comment on this post and get involved with a new group of people who want to talk about more than what they had for breakfast, or post more interesting things than videos of cats you don’t know.
Learn nmew skills, to replace those you lose. I set myself a new challenge each year. For example, I set about becoming computer literate one year, and that has become an ongoing experience. Another year, I decided to learn Greek, and that has opened up new experiences and places. I learned to make and edit videos (they are on Youtube under Steve Hobson 1) even though I was blind (it makes it more of a challenge!), and so on.
There is so much out there to think about and learn, and this advice will help us all to stave off the dementia that is grinning at us in the, near or far, future.
Keep feeling. When you’re first diagnosed you are overwhelmed by feeling, most of which you won’t want to feel. You’ll feel really pissed off with everything and everybody and you’ll feel like the world has just poo-ed on you. It doesn’t feel fair and you’ll feel very sad. The temptation is to ignore these feeling and pretend you’re fine.
Don’t do this. The bottled up stuff will make you weird. I’ve been there, and it’s not a good place for you or the people you love.
Ask for help. Go to your medical team and tell them. They’ve seen it before. If they prescribe tablets, take them. Modern anti-depressants aren’t addictive, and they don’t numb you up. If they do, cut down. You could do without becoming a zombie. They just help you see the wood for the trees.
It’s not a mark of failure to go for counselling. It’s part of a lifetime’s project to understand yourself, and you’ll find it really interesting.
Become familiar with your emotions. Learn to meditate, and do it. Eventually it becomes your favourite time of the day.
Leave comments here. Use the community that is developing online.
Keep your friends, and by friends I am including family and anyone who sticks with you and helps to support you.
When you are first diagnosed, you find out who your real friends are. Some of your friends will disappear like snow in summer. Let them go. They were never your real friends.
Of course, it is very sad for them if they can’t handle your illness, or if they’re just too busy with their children and their jobs and their houses to see past the disability to the person, who has not changed from the friend they knew last week.
But you won’t have the energy to deal with their issues as well as your own, so make a decision to only spend time and trouble with people you want to spend time with and who want to be with you.
The others are lost to you. Accept it. It’s not your problem.
The friends and family who stay in touch, who phone you up to go for a drink or just for a chat, are your most important resource, because they remind you that you are still you and have not sprouted another head.
They might do your shopping if you’re ill, but that is not the point – you can pay a stranger to do that! They are your pleasure and your belongingness. Treasure them.
Get connected. This one is fairly straightforward. If you are reading this, you probably have access to a computer of some kind, but, if you haven’t, get one. I’m no computer geek, so there’s no point in me giving you advice about which computer to get.
The only advice I would give, however, is about accessibility. It doesn’t matter how powerful it is if you can’t see the screen or use the keypad or accurately touch the screen. All of them are powerful enough for most needs. They all pack a computing punch greater than they needed to put men on the moon, so, unless you’re planning a holiday on Mars, you don’t need to worry.
Are you OK with a small screen, or do you need a big one? Buy accordingly. If you need special features, like a screen reader because you’re blind, get this afterwards. I don’t advertise on this blog, but I think JAWS is probably the best I’ve used, but it’s very expensive; Windoweyes, which can be used in the same way, is a free download. I cut my teeth on Jaws (pardon the pun), and now I use Windoweyes.
Get on to social media, like Facebook and Twitter. They don’t cost anything, enable you to make contacts, and, provided you don’t mind GCHQ or the CIA reading your stuff, just join in, but remember, whatever they say about privacy, the internet is not private. Everything you put there will be available for ever. If you are a potential criminal, take appropriate advice. Know what I mean?
But, for the sane among us, it can be great fun, and, for the housebound, it can be a life-saver.
While you’re enjoying your virtual coffee mornings, don’t forget the practical help you can access on the internet, like booking entertainment or travel or assistance on journeys, and do your shopping on line. In my experience, the delivery van drivers will bring it into the kitchen and exchange pleasantries, as well. I’ve never tried, but I wouldn’t be surprised if they’d put it away in your cupboards, if you asked.
Getting connected means connecting with people through your computer, so talk to your delivery person. He or she is a person, not another computer.
Say hello to the world. What?! How mushy is this? It is, of course, very mushy and sentimental. It’s my nod to the New Age therapists, who are waiting out there to take your money. You do need to stay as engaged as you can, but that doesn’t mean you should dispense with reason. Try to engage with what you can see, or hear, or smell as though you had never experienced this sensation before. The world creates itself in your brain every second, and so it is marvellously fresh. Say hello to it all day, if you can. Everything you sense, do and think is for the first and only time in the whole history of the universe. For over 14 billion years no-one or thing has ever experienced it.. It is unrepeatable. Look at it.
And finally, keep planning. There are two kinds of planning you need to do.
You need to think about the possible progression of your M S, and then envisage ways of coping, or managing, or living with these progressions. Don’t leave things till they become emergencies. If you end up being rushed into hospital, or put in a Home, you forfeit your control
Think about stair-lifts, downstairs bathrooms, access to the house and garden. At least think about them, before you have to. The same is true of Homes, if you think you might need one in the medium future. Find out what the Homes are really like, by doing some voluntary work in them.
Use a manual wheelchair occasionally so you don’t feel a freak when you’re in one. Plan ahead. Make your practical life as future-proof as you can. If you have to, move house – it will be even harder to do this later.
The second type of planning you need to do, is planning your emotional life, now. Plan to do things, use public transport (which forces you to plan). Plan your days, and plan your movements, like a rock climber. It is that split moment of inattention that results in the fall and the accident.
Above all, know yourself. Know when you are tired, and know when you’re having a good day. Learn how your body spends its allocation of energy. If I had to reduce all these posts to only one piece of advice, it would be to think of yourself as an athlete, which, in a sense, you are, and treat yourself accordingly. Sleep well, eat healthy food, train every day and keep fit.
It is still possible to win the race.