Multiple Sclerosis Awareness Week
MS Awareness Week (22-28 April) is all about moving; in fact, we want you to Move It For MS! The Multiple Sclerosis Trust are encouraging everyone to pop on their pumps and introduce a little activity – big or small – into their daily routine. Staying active doesn’t need to mean running marathons or going to the gym, it’s about doing it at your own level, at your own pace.
Doing it YOUR WAY!
In the past, people with MS were advised to avoid exercise. It was felt that since many people with MS experienced fatigue and found their symptoms worsened when hot, it was best to avoid activities that could be seen as tiring.
It turns out that this was not good advice and that regular, moderate exercise is now known to be an important part of maintaining good health and wellbeing for people with MS (and those without). There is evidence that it can help with many MS symptoms, and also with general quality of life, including mental well-being
What is Multiple Sclerosis (MS)?
MS stands for multiple sclerosis. It is a neurological condition that affects the nerves in the brain and spinal cord, also known as the central nervous system or CNS. ‘Sclerosis’ means scarring or hardening of tiny patches of tissue. ‘Multiple’ is added because this happens at more than one place in the brain and/or spinal cord.
- MS is a disease affecting the central nervous system(the brain and spinal cord)
- More than 100,000 people in the UK have MS
- MS is the most common condition of the central nervous system affecting young adults
- MS is a life-long condition but it is not a terminal illness
- It is not infectious or contagious so it can’t be passed on through meeting someone with MS
- Everyone’s MS is different so no two people will have the same range and severity of symptoms, even if they are closely related
Living Day-to-Day with MS
Symptoms can come and go and vary greatly in their impact on someone from day to day, or even from hour to hour. There is a wide range of possible symptoms but you usually experience only a small number around the time of diagnosis and you may never experience them all. Symptoms vary from person to person and from day to day. This can make your MS rather unpredictable and can take some getting used to.
Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.
Many of these symptoms may be invisible to other people. This may upset you if you’re feeling very unwell but others think you look OK. You may need to explain that your MS is causing difficulties, rather than assuming that others can detect this.
There are treatments for the symptoms of MS although the condition can’t currently be cured. At the moment there is no cure for MS but there are disease modifying drugs to reduce relapse rates and there is a wide range of possible treatments for symptoms which you can discuss with your health professionals.
Although the effects of MS can vary greatly from person to person, the condition is often categorised into one of three broad types. MS is, at least in part, an autoimmune disease which damages the protein coating of your nerves. The resulting patches of nerve damage (sclerosis) mean that messages don’t get passed along the nerve very efficiently or, sometimes, may not get through at all. Your symptoms will correspond to the areas of your brain and spinal cord that have been damaged.
MyLiferaft Supporting Multiple Sclerosis
MyLiferaft is a free resource which gives an individual and those who support them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes on board, helps improve consistency and is truly centered around the person and their needs.
Try our Free Account now to discover the many ways in which MyLiferaft can make your life easier.
- Add a diagnosis and include what having MS means to you
- Add in details that will help others understand you and your world
- Tell others the best way to interact to reduce your levels of stress
- Let others know how to help you if you are feeling stressed
- Try keeping track of your mood
- Keep a record of what works well for you and what doesn’t
- Set yourself some goals and monitor progress.
- Share your goals with others who can help you achieve them.
- Taking medication? Keep a track and include if you need support to manage your medication
- In education and need extra support? Document this in the education section and monitor progress
- Keep a record of all meetings with professionals and track what was discussed
- Share information with others e.g. your doctor, family friends, school
At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support. Our extensive list of resources has a specific section for those with multiple sclerosis with links through to organisations such as the MS Trust and the MS Society. There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Epilepsy, Mental Health, Benefit information and various NHS information websites.
Click here to see our full list of Resources.