I’ve been meaning to write this blog post for a few days now… but it has been a hell of a lot more difficult to start than my previous one in this series (This is my MS – physical symptoms). It was easy for me to write about the physical symptoms of my MS – I am at the stage now where I live with them everyday. No more periods of remission for me, just a constantly ‘dead’ leg, cramps and spasms and fatigue. Luckily, I have found that these can be somewhat controlled, namely through medication and lifestyle factors, which I will write about another day. But I thought that for today, I would focus on the mind – how living with a diagnosis of Multiple Sclerosis (MS) for almost 25 years has impacted upon me; my thoughts and feelings and my attitude to life.
It is difficult to pin down how your feelings change over a number of years; 25 years ago, I had my first case of optic neuritis – inflammation of the optic nerve – which left me with a blind spot in my vision at 13 years old. There was no mention of MS at that time. I remember feeling inconvenienced that the blind spot meant that I couldn’t play basketball easily at school, but that is it. It went away as quickly as it arrived. Further relapses, leading to a diagnosis of MS when I was 15 years old made me feel different to my friends and again just completely inconvenienced and annoyed about the fact that MS was stopping me from living my life as I wanted to. Not being able to dance at the school ‘prom’ easily and having to stay in more nights than I wanted to, as my body needed the rest. Surprisingly, I don’t remember feeling particularly ‘down’ about my diagnosis… yes, I was given the literature about MS to read but I didn’t equate myself with the people it discussed in these booklets. The thing with my Relapsing Remitting MS (RRMS) is that I made a full recovery between relapses, so the time spent having a relapse was just something I had to get through, then I could go back to my life living just as I wished. At that point, I then went 16 years with only a couple of minor relapses with full recovery. Was this MS? I could handle this! I half told myself that because I didn’t think about MS everyday and just got on with life (Uni, parties, travelling, marriage, kids) that all this thinking positively was doing something to keep me well. Little was I to know that my MS would turn progressive, with a slow decline of ability, both physical and mental, by the time I was in my 30s.
I have always been a glass-half-full kind of person; I try to think positively about any upcoming uncertainty and find the good in situations that may have gone wrong. Even my neurologist said to me, when I last saw him, ‘you are always smiling when I see you’ – despite me then going on to tell him how difficult I was finding work and how my symptoms had progressed in a short space of time. Am I always smiling? I don’t think so – and my husband would certainly say that I am not walking around with a Cheshire cat grin on my face – but I do still have that glass-half-full attitude.
There is no doubt that my MS has progressed and I would be a complete liar if I were to say my mind hasn’t gone though it’s ups and downs just like my physical body has. Each new symptom chinks away at my mental health; I still try and think positively, but it isn’t so easy when it feels like your body is falling apart. I have written before about The Hidden Symptoms of MS that I face; feelings of guilt that I didn’t take care of my health when I was first diagnosed, worry for the things to come and disappointment that I can’t be the Mum, wife, daughter or friend that I truly want to be. I’m not ashamed to admit that I have been taking a low dose anti-depressant and I feel like it helps to keep these feelings in check, allowing me the ability to focus on the good stuff in life, and to prioritise my own self-care to make me feel as well as I can.
Having a chronic illness like MS means that I do have to stop and appreciate what I have. The kids fight like cat and dog but I am constantly told how well behaved they are when they are out with their grandparents, and I have the pleasure of watching them grow into interesting and inquisitive young people who ask me questions that I can’t always answer! My parents and my younger brother and his family have recently moved to live in the same town as my family, and we are lucky to see each other every week. My parents have helped me with my garden which means that it is now a pleasure to sit out there on a warm
day, enjoying a cup of coffee and some peace and quiet while the kids are at school. Blogging has given me confidence and makes me feel valued – people have written to me saying that reading about another person’s chronic illness makes them feel like they are not alone. And having MS makes me realise that life is short; so I try and get out there and do the things that scare me even if I am nervous – such as singing karaoke at a friend’s recent party, though I have to admit that I was helped by a glass of wine or two. I go out and am no longer daunted by having to rely on my mobility scooter: it gives me freedom. All of these little things don’t take away from the worry of having multiple sclerosis, but they help me to take my mind off of it somewhat.
The one thing that I haven’t experienced is ‘talking therapy’ – I would love to hear from anyone who has used CBT or similar to help them through a chronic illness, and whether they would recommend it. I think that, for me, it is important to acknowledge that although there will undoubtedly be some shitty times ahead, there are also going to be some fantastic, memory-making ones too. I can’t wait to see my children grow up and become adults and I am not going to stop making plans and trying new things just because I have an illness, I just might have to make a few adaptations. I aim to treat my mental health in the same way as my physical health – to use medication as needed, take the time to put myself first and use alternative therapies to aid rest and recovery. And keeping that glass-half-full mentality – because it makes things a whole lot more positive than always thinking of doom and gloom. Something that is easier said than done, but I’ll be working on it!