Monthly Archives: March 2014

Feeling the fear and having MS anyway….

I’ve been hiding, reluctant to write because I know what it will bring……it will mean talking about what has been happening to me lately and that in turn means that I must accept yet again that I have a chronic, as yet incurable, illness. I have Multiple Sclerosis and for the most part, despite being diagnosed nearly 14 years ago, I am very well. In fact the odd up and down notwithstanding I have escaped anything really life affecting for 7 years so I am indeed blessed. I don’t see a neurologist and I am not taking anything or doing anything different from the majority of you reading this. I am just trying to live my life as normally as possible. Maybe I am in denial, maybe I haven’t really dealt with it at all but that leads to the question of how exactly do you do that?

How exactly do you come to terms with the diagnosis of a physical and potentially mentally disabling condition when you are only 27? How do you then go on to deal with it every day for the rest of your life? How do you cope when everything that you thought you were and would be has irrevocably altered beyond all recognition and your control? How do you live every day knowing that you might wake up the next not able to walk, dress yourself, go to the toilet on your own, pick up your children – even feel them cuddling you, drive, swallow…….the list goes on.

I think my answer has to be that I don’t really know. I don’t have a magic solution to this other than to just keep going. I remember being terribly afraid to plan anything at all – holidays, nights out, even playdates for my children too far into the future because I could never assume that I would be well. I was almost paralysed by it. Now sometimes I find myself drifting too far in the other direction, feeling a sense of desperate urgency to cram everything into the present whilst I am well…just in case. This, I know, puts huge pressure on my marriage as my poor long suffering husband tries to juggle our finances to accommodate my intermittent panic attacks about my health as I want to book holidays and trips for the family. It’s hard to calm down sometimes when I feel my body betraying me and I wish for the life that I always thought I would have.

These moments are less frequent though as I have begun to realise over the years that we all face our own mortality every day in some way or another. We all get ill in some way or another too and we are all unpredictable as is life. Strangely you know I really rather like that. It does give a sense of freedom somehow as you never know what is around the corner.

So, I try to just keep going. I do the things that I want to even though I know at times they might get interrupted by my health although in truth who can’t say that? As I said earlier – we all get ill. I try very hard not to get too frustrated whilst I am having an attack and try to use that time to regroup, to do things that I might not otherwise do like reading a lot (uninterrupted) and watching films that I have longed to see but haven’t quite previously found the time to.

Most importantly I want to be there for my children and my husband – emotionally if I can’t be physically – whilst really trying not to become too self absorbed and spiralling down into my own special pity party. My friends help me with that too, they don’t let me feel too sorry for myself and they check in with me now and then to make sure that I haven’t forgotten that I am still part of their world and for that I am truly grateful as MS can feel very very lonely.

I have at times felt very lonely indeed through no fault of any of those people in my life that I love but because I shut myself away when I get ill. I get scared that no-one will really want to be around me when I am not the ‘normal’ Anna that they are used to. The one that goes running, makes them laugh at Bootcamp, goes out for lunches with them and so on. I get scared that they won’t want to see the me that is frightened, wobbly, tearful and not coping some days. That is my insecurity and not their failing and getting older has made me realise that good friends stick with you regardless but only if you let them in and don’t push them away when you aren’t your own perfect version of yourself.

So I will keep going anyway which is why I like running (or in my case ambling) because one day I won’t be able to and that day may come sooner for me than most people and in the meantime I will run and laugh and dance and love those special precious human beings that are my family and dear friends and we will have fun no matter what. I know my family will love me whatever and I know my girlfriends will push me in a wheelbarrow whilst taking the piss out of me and that is exactly what I need. Someone once asked me when I got diagnosed if I was going to move into a bungalow. I resisted the urge to tell them to run into my fist and instead asked them if they were planning on moving into an old people’s home because after all one day they would be old.

I was going to add a photo of me after I ran the Sports Relief 3 miles at the weekend with my friends and family but actually I have decided on my Cancer Research naked selfie. Because it is honest. This is me. My name is Anna and I have Multiple Sclerosis and I will NEVER give up.

 

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