M.E. doesn’t let me be ME

One of the hardest things about this restricted life is not being able to be the person I feel I truly am. On the inside I’m still the same, but the restrictions of M.E. do not allow me to act in the things I want to do.

I’m talking about friendship really. I cannot be the friend I want to be, the friend I feel I truly am, because I am too unwell.

It doesn’t matter that I’d do certain things if I could. It doesn’t matter than my family and friends know I’d be there for them if I physically could be. It doesn’t matter that others will pass on my love or well wishes. It doesn’t matter that people understand I am simply too unwell myself to be with them right now.

It doesn’t matter. It doesn’t matter that it’s out of my control and not my fault. It’s just unfair. The end.

I have been unable to support friends at their parents’ funerals for goodness sake. I’m not going to make a whole list, but from that you’ll get the gist.

I can’t stand that this illness stops me from being the person I was; the friend who was called in a crisis. Part of the support crew of friends who’d pick up the pieces whenever needed. I can’t do it. And it doesn’t matter that they know I would if I could. I want to be able to be that version of myself. And I can’t be.

This is not me fishing for compliments about the kind of friend you think I am. I’m not doing myself down here. I am the best friend I can be, but my point is that I’m too unwell to fulfil my full friend potential. And right now it’s really frustrating. I’m pretty angry about it actually.

3 thoughts on “M.E. doesn’t let me be ME

  1. 100% get it. My best friend got married on 3rd January and I wasn’t there. I should have been there, I’d planned to be there but one night in October after not sleeping for a week and having my anxiety spiking all over the place I realised I wasn’t going to be able to manage a 3 hour drive, a night in a hotel, a full day of wedding festivities, another night in a hotel and then a 3 hour drive home. It was going to kill me and I’d be looking at a minimum of a month in bed afterwards. I then did the half hour drive to see my friend and her now husband, sat on her settee and sobbed while she held my hand and told me it was okay and I then drove home and slept for 3 days. She video called me when she was getting ready and again just after the ceremony but I wasn’t there. I should have been there but couldn’t be. They didn’t mind but I did. This is the illness that just keeps stealing from you and after 25 years you’d think I’d have come to terms with it but it still hurts xxx

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    1. Ellie I’m so sorry to hear this. I’m so sorry you had to miss out. It’s cruel and unfair and I wish for better for you and me and for all of us xx

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    2. It won’t help to reply, just as your friend gave you understanding that ‘it wasn’t your fault’ but I totally feel your pain and frustration. Yes, again I understand your remark that ‘you’d think by now come to terms with it’ but as well as all the logic to try to manage and or ignore – knowing we’ll live with payback – we still have feelings of being robbed of control of our lives. My husband and I spent a lovely rare few days with family between Christmas and New Year but subsequently I’ve just spent the last week in bed. I couldn’t object as knew body had ‘absolutely gone’ but last couple of days have frustrated as my husband, who is golden and whom I appreciate, has visited friends locally ‘to catch up’ and they ‘understand’ BUT unless you are part of relationships they grow thin and friends are lost.
      Sorry if that doesn’t seem as bad as missing your friend’s wedding but these are friends not seen for months and …… as you say ‘ we should be used to this /come to terms by now !’

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