I adapted this and printed it, feel free to do the same:
Living with MS
Having MS means many things change and a lot of them are invisible. Unlike cancer or being hurt in an accident there is usually nothing to see, no outward sign to prove it is there. But it certainly is.
MS is a degenerative disorder of the central nervous system. It isn’t in the head nor is it contagious.
Multiple Sclerosis will not kill me. Nobody ever died directly from MS.
Having MS doesn’t make me a different person to who I was before. I still want to do the best I can in my life: for me, my children, my family, my friends, my work. I still care and worry about work and home life as much as anyone else does. Most importantly I still want fun. I still want to do the things I loved before I was diagnosed.
Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. I can’t control how it feels or how often I feel good or how often I feel terrible.
Some days I spend in extreme exhaustion. Some days I can sleep for fourteen hours and still be tired. Some days I will be bouncy and energetic.
Please understand that sometimes being able to stand for ten minutes doesn’t mean I can stand for twenty. Just because I managed to stand for thirty minutes yesterday doesn’t mean I will be able to do the same today.
If I am functioning normally I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a bad afternoon. There may be no warning; I may just suddenly feel terrible.
I can’t warn you when this is going to happen because there isn’t any way for me to know. If I seem touchy or sensitive at times it’s probably because I am. It’s not how I try to be. As a matter of fact I try very hard to be normal.
MS is a condition with lots of different kinds of neurological symptoms, some of which I experience most of the time to varying degrees.
I am always tired but sometimes I will be extremely fatigued. MS fatigue is like a wall you cannot get over; you cannot fight it, you just have to sleep. Cognitively, I may not be able to remember things and I may not find the right words I want. Physically, I may stumble about without co-ordination. I may drop things. I might be dizzy. I may feel weak. I may feel as if I am wearing boots made of heavy cement. I may have pins and needles. I always have a strange icy/waxy feeling in my hands and head and numbness in parts of my body (for me my feet, hands and bladder are most affected by numbness). I may feel as if there are ants crawling on me. I may have burning patches of skin. I may feel pain anywhere in my body and in my head. My body buzzes as if there is a low electrical current running through it. My muscles are usually twitching and they may tighten and cramp. I may jerk and spasm. I may wet myself.
What’s going on?
In Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Think about an electrical wire which has plastic covering on it. If the covering is removed the wire gets a short in it. This is the case with MS. Your nerves are a wire, myelin is the protective covering.
With Relapse Remitting MS the main damage occurs during short, intense periods of 4-6 weeks typically. This period is called a relapse and causes severe symptoms which may require steroid treatment and hospitalisation. The myelin can regenerate but during the time it has deteriorated and the nerve is exposed, damage is done to the nerve. This nerve damage is not reversible, thus causing the numbness, pain, tingling and other feelings which persist during the remittance stage. During each relapse the nerve damage increases adding to what has gone before and so, over time, symptoms will gradually get worse.
A ‘relapse’ will knock me for six and you may not see me for several weeks until I recover and resume the remittance stage. During each relapse further damage is done and recovery less complete.
Anything you can do?
In so many ways I may depend on you. I may need you to check on me. I might need you to help me do things every now and then. It is very hard for me to accept help, so sometimes you may just have to make that decision yourself and don’t give me the option. Because I feel bad at times I am always pushing myself, and sometimes I push myself too hard. When I do this I pay the price. Emotionally and physically I pay the price for overdoing it but sometimes I have to. My limitations, like my symptoms are invisible, but they are there.
But please know I am not lazy, I promise you I am never ever lazy.
Be understanding: understand the difference between ‘happy’ and ‘healthy’. When you have the flu you probably feel miserable with it, but I have a condition that doesn’t leave. I can’t be miserable all the time. In fact I work hard at not being miserable. Just because I sound good doesn’t mean I feel good. I make myself be happy. That’s all. It doesn’t mean I’m not in pain or extremely tired. It doesn’t mean I am getting better or any of those things. I cannot get better. I can only get worse. That is nothing to be joyful about.
Don’t suggest ways I can help myself: I have doctors and an MS nurse to guide me on those things. There is no magical solution, if there was every MS sufferer would know about it.
Know: I have cried. I have cried my heart out. In the privacy of my home I have broken down many times. I am not used to this. It is totally new to me. I hate it.
There is no cure for Multiple Sclerosis and it won’t go away. It wreaks havoc on the body and mind. It is exhausting and I am doing my best to cope with this. I will live my life to the best of my ability. But it is a new life, an unknown and uncertain life, one I am still adjusting to. I grieve for the future I hoped for. You are my link to normalcy since I will never be normal again until a cure is found. I ask you to bear with me and accept me as I am.
(Contents adapted and personalised from an available piece of writing by DC)