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How do you cope?

I had my first MRI scan in December last year. I was told it was probably MS so I had another one and an LP. Definite diagnosis came in March. I thought it would get easier to deal with but it hasn’t. All my normal coping mechanisms are gone… I can’t walk or go to the gym. I can’t write my diary. I can’t dance or even blot it out with alcohol anymore. I hate my life, I can’t find a reason to carry on with it, the only thing keeping me going is my boyfriend and I feel guilty about what I’m putting him through and feel like I’m pushing him away and its only a matter of time before he dumps me anyway because what can I offer him now? I feel like I’ve been given a life sentence and I don’t have the energy or mental strength to live like this.

Please tell me how you’ve dealt with your diagnosis and what keeps you going?

I genuinely thought I was prepared for my diagnosis of MS - but I wasn’t, not really. The poo hit the fan about six weeks afterwards - when the reality of it truly got me. I had a few weeks of feeling sorry for myself (most unlike me), and the constant worry about my future got way out of control; I went through a phase of thinking I was completely finished, that my life was over, and ‘what good am I to anyone, now?’

Over the coming months things started to change again, and I began to realise that, okay, MS is not by any means a walk in the park, but it’s not a death sentence either. I had a choice; sink, or swim - and I chose swim.

Medications are important - they can make all the difference to your everyday life. Modafinil for example, has been my saviour, I couldn’t function without it. It’s not stopped my fatigue and I’m always exhausted, but without it I couldn’t do what I do. The same goes for my neuropathic pain relief - I couldn’t manage without them either. Make the most of the services available to you - neuro physio, for example, can help with stretches and exercises to help strengthen your muscles, and supply various aids should you need them (I have a foot/ankle brace); get yourself a Blue Badge, and ask for an OT assessment at home - equipment can make a huge difference. I have a chair lift in the bath which is a fantastic help.

It’s not easy, but it’s doable, although I couldn’t have done any of it without what I call ‘my network’ - my family, friends and colleagues. I asked them to laugh with me when I hurl things in the air, stumble, trip and all the other oddities my body does without my permission. My bosses accomodate my health - they bought a larger monitor for my PC; they know when I’m feeling more exhausted than normal, or in a lot of pain for example - they go with the flow and help when I need it. I still work full time in a full-on stressful job but I’m lucky that I’m virtually my own boss, so I constantly prioritise my workload; have calendars, diaries, post-it notes everywhere to help me remember things.

I do the same at home. Everything’s written down, otherwise I forget it. One of the main issues I have is the constant learning of what my limitations are. I learn the hard way cos I’m a stubborn little mare - part of that is because I refuse to let the MS dictate any more than it already does.

My life has changed, for sure, in some ways it’s changed for the better. The MS has highlighted what’s really important in life, and yeah so I can’t do everything that I used to do, but I’m still me. The people around you won’t suddenly stop loving or caring about you…but don’t push them away. This is new for them, as it’s new for you.

Above all, look after you; eat well and exercise gently - it all helps.

Apologies for such a long reply; my father passed away quite recently, and my mother a year before that - I’m only just getting back into things myself.

PM me if you need to chat

Debbie xx