Something that isn’t talked about often, is the emotional strain of living with a chronic progressive disease, such as MS. I think one of the reasons we don’t talk about it, is that it is so very hard to describe and explain how it feels, in a way that other people can understand and because, just like physical symptoms, feelings aren’t static and can change from day to day, or even hour to hour.
Depression is a very common symptom for people with MS. Some of this is attributed to the changes taking place in the brain due to the disease and some is likely to be linked to the constant ongoing loss and grief that we feel for our old selves and worry about the future.
Here is what the MS Trust has to say about depression in MS …
“Around half of all people with multiple sclerosis will experience depression at some time in their life. This is three times higher than for the general population. Part of this extra risk comes from MS damaging nerves in the brain, and part comes from the experience of living with a complex disease.
People with MS are likely to experience chronic depression, with symptoms lasting a long time, even several years. In MS, depression is unlikely to go away on its own, due to the underlying lesions, but it is very treatable, so get help as soon as you can.”
The MS Society website also has an informative section on Mental Health, Mood, Depression and Stress.
Unfortunately, it is my experience that neurologists rarely ask any questions about emotional well-being. Thankfully, I have an excellent GP, who has been very supportive in this area.
The progression of MS is gradual and is such that changes from one week to the next are not obvious. I make small adjustments or make decisions based on the here and now, not realising that I am slowly but surely losing small pieces of my life. I’m having a reflective day today and realise that without being fully aware of it, I have stopped going to gigs (I love live music), I’ve stopped going into town for cocktails, I’ve stopped initiating get together with friends, I’ve stopped having nights out in the pub, I’ve stopped spotting interesting events online or when out and about (because I’m rarely out and about) and getting in touch with friends to see who’d like to come with me, I’ve stopped going for weekends away or visiting new places, I’ve stopped going for long walks … slowly but surely I am letting go of many of the things in life that I enjoy the most. My dreams of travel, of doing a Masters, having adventures, becoming involved in local politics, taking up photography have all but faded away. This has been a rather painful realisation for me.
There is a feeling of isolation attached to having a debilitating illness like MS …not just because of all the social situations I miss out on, but because I spend a lot of time living in my head, worrying and wondering about what comes next, grieving what I have lost and not feeling able to talk openly about these feelings. This isn’t anyone’s fault …I really do have wonderfully supportive family, friends and colleagues around me …it’s just easier to keep it all in and maybe occasionally use this blog to let it all out?!
I have spent much of this weekend making notes in preparation for completing the dreaded PIP form. This has forced me to focus on all the household tasks that I can no longer do or am struggling with … way to make me feel a failure, DWP!
So all of the above has led to me having a rather weepy and depressing weekend.
There are many online support groups, forums and Facebook groups where I can talk to fellow MSers, ask questions, offload and also provide support to others. If you have MS, or any other medical condition for that matter, I would urge you to seek out and join one or some of these groups. We can learn so much from each other’s experiences and it can take away some of those feelings of isolation, when you find others are dealing with the same concerns.
If anyone reading this is worried about me …please don’t! I need to do this from time to time …I need to acknowledge my negative feelings, instead of hiding them away. I am already feeling more positive this evening and actually looking forward to work tomorrow!
