The week of April 24th – 30th marked ‘MS awareness’ week. MS charities ran campaigns to support as many as people as possible, in learning about the condition, how it impacts a persons life, and what everyone could do to help.
What is MS?
Multiple Sclerosis (MS) is a medical condition affecting the central nervous system (consisting of the brain and spinal cord) which sends messages or signals to different areas of the body, in order to gain a response – this could be anything from blinking, nodding your head, to standing up, or even moving. The MS Trust explains that with this condition, the body’s immune system mistakenly attacks the central nervous system, resulting in damage to nerve cells by destroying their protective cover (called myelin) [1]. As a result of the damage caused, signals from the brain are not passed around the body as effectively, which can cause a delay in the response requested, or the signals/messages not getting through at all. Of course, the science goes much deeper, however this helps to gain some insight into the condition.
There are three main types of MS; Relapsing, Primary Progressive and Secondary Progressive. The MS Society [2] gives us a brief description of each:
- Relapsing MS | People experience attacks or flare ups of symptoms which will then fade away partially, or in some cases completely. They can also experience the same symptoms time and time again, or experience totally new ones. They estimate that around 85% of new diagnoses are this type of MS.
- Secondary Progressive MS | This is the next stage, and many of those who experience Relapsing MS will progress to this type. With this type of MS, there is a steady build of symptoms and you are no longer likely to have relapses with symptoms improving.
- Primary Progressive MS | Is described this way as the initial onset of symptoms are progressive, and there are very few or no relapses – the level of disability will gradually increase.
Symptoms
As one can imagine, there are a wide range of symptoms associated with MS which inevitably vary from person to person.
The following is not an exhaustive list; however, symptoms can include pain, numbness or tingling, fatigue, spasms or tremors, loss of balance, speech, vision, and memory issues.
Of course, as well as the physical symptoms there is a very real impact on mental wellbeing, and this can often be overshadowed by the more ‘visible’ symptoms. However, we strongly believe this to be of equal importance in addressing and managing. And so, it is this aspect that we shall focus on today.
When considering mental health issues in MS, there are both direct and indirect ways in which the condition can impact on this. Firstly, as a direct result of nerve damage. As discussed above the protective layer of nerve cells become damaged in MS, and if the cells are damaged in areas of the brain that affect mood and emotion, this can obviously have an impact.
MS can have an indirect impact on mental wellbeing also. Imagine the daily challenge of living with physical symptoms such as pain and fatigue, not being able to carry out your normal daily activities as well as you used to or not at all. No doubt the constant battle would have a negative impact on a person. As I’m sure you can imagine, this could affect numerous aspects such as work, family life, relationships and hobbies to name but a few.
To try and get a better understanding of the condition and the impact it has, I spent some time talking with Katie, a friend recently diagnosed with MS. She very kindly agreed to answer some questions regarding how she felt in receiving the diagnosis, the impact the condition has had on her mental wellbeing and how she manages day to day with this. Katie was diagnosed with relapsing / remitting MS.
She tries to keep a positive outlook and remain strong for her children, which is her main focus. She feels that by doing this she is able to get through and remain positive, although as to be expected she can have bad days. Here’s what she had to say.
How did you feel at the time of diagnosis?
I felt quite numb at the time. I was diagnosed out of the blue unlike some people who have to fight for a diagnosis, so it was completely unexpected. I thought I just had a trapped nerve. It was the day before we went on our first holiday since having our son so I just had to get on with things. I did feel like I was failing a bit at being a Mum, I couldn’t make a bottle, change a nappy or even carry my son at first due to numbness. However being a Mum also meant I didn’t have time to wallow. I just had to carry on, which I do think helped me force myself to be positive.
Have those initial feelings changed now?
I don’t think that has really changed now. Although, mentally I do feel I’m a lot stronger now than I was. I had suffered with depression as a teen and through most of my 20s but the things I thought were bad before seem insignificant now. I think if I can carry on and not let MS stop me then nothing else can either.
What do you find most challenging?
I find it hard to be strong for my kids as I do have bad days and they’re young so don’t really understand. However, my eldest is 6 and is now starting to have an understanding. Because of this I’m finding it hard to balance being honest with him, but not making him worry.
How does it impact on family members mental health?
I know my husband and Mum especially worry about me. They don’t want me to overdo it which I do have a tendency to do. It’s probably harder for them to see me be in pain than for me.
Do you have any coping mechanisms, and what do you find helpful?
I just get on with things, I don’t give myself time to dwell on the potential future issues as they’re not guaranteed. I really do think being a Mum helps, as my kids are so much more important than me and my condition, so I am just focussing on them and enjoying being a Mum as much as possible.
Katie tells me that she was offered counselling through work following her diagnosis, however at the time she didn’t feel ready to talk about it and so never took this up. She has a great support network in her family and friends, which she feels is really helpful. She has been able to continue working, and work have made adjustments in order to work from home, which makes managing her symptoms much easier.
I was fortunate to speak with someone else regarding her diagnosis of primary progressive MS, although she would like to remain anonymous. In this case she describes a really rapid onset of symptoms and deterioration which had a massive affect on her mental health.
She had to give up work in a role that she had held for over 30 years as a care assistant, and herself now employs someone to assist her with daily activities of living. She described how the sudden change in circumstances impacted her mood massively, made her isolate from her friends due to feeling ashamed of her decline. She admits that for a long time she was in denial, and would try and force herself to do things she used to be able to, however following a fall she came to the realisation that she needed to accept her situation. Alongside her neurologist and own GP, she did a lot of research into the condition, and decided that counselling would be beneficial for her and help her come to terms with the changes in life. She is currently undergoing therapy and tells me that this is so helpful, and would recommend this to anyone considering it. She found that the MS society website has been a god send also, as there is a wide variety of advice and support available, which has also given her lots of ideas to keep herself occupied and take her mind off things.
So what can a person do to help stabilise their mental wellbeing, and what coping strategies are effective?
The truth is, the possibilities are endless! Whilst I don’t suffer with MS myself, I do suffer with depression and anxiety, and have used various things to keep my mind occupied, and think of something else. Reading and writing are my biggest forms of escapism, and have a huge positive impact on my mental health. However, everybody has different likes and dislikes, and what works for one may not work for another.
The MS charity MS-UK [3] liaised with some of their MS community, developing some fab tips on how they manage their mental health and wellbeing, which others may find useful:
- Mindfulness, physical exercises and maintaining as active a life as possible really helps me stay positive
- Problem solving on a daily basis gives me a sense of achievement
- Talking things out. If you don’t have someone to talk to, try talking to yourself. I’ve had some of my most successful problem-solving chats with myself and I don’t get any disagreements!
- Keep going. The longer you try the easier it is
- I manage my mental health by looking after myself and investing in my health through exercise and other therapies such as reflexology. Keeping busy and having ‘rules’. I try to keep busy at home and give my day structure which I really think helps me. Don’t be afraid of making new MS friends – they’ll really enrich your life!
- Write down a positive each day. Put it in a container. Review them whenever things seem too much
There is a range of support and advice available online for anyone diagnosed with MS or anyone who has family or friends with the condition and is struggling with mental wellbeing. For more information or to seek support, please see below:
References:
1. The MS Trust ‘ What is MS’ What is MS?’
2. The MS Society ‘ Types of MS’ Types of MS’
3. MS-UK
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Author: Imogen
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