Die ME / CFS die! Brain dump 101.

1 Jun

It’s been a funny old week.

I’m sorry if this post is a bit of a ramble and comes across all disjointed. It is merely a reflection of the goings-on inside my head. I wish I could just open my head and dump its contents on to the table. My head does not feel clear. It feels scrambled, messy, fuggy and foggy. This is just me (both myself and the illness sense of the word).

I’ve been pretty emotional and often in tears this week.

I’m not sure why.

Have the planets realigned or is it a new moon or something? I have no idea about these things. I can’t even blame my time of the month, that is still a week or more away. ย Lord knows what that will bring.

All I know is I have real bouts of myalgia pain, body aches and my something is playing havoc with my temperature gage. My head has been all over the place and very, very scrambled.

Sat here now, my fingers hovering over the keyboard. I’m a bit at a loss of how to begin. Jess, just write..just write, the voices in my head urge me on. It doesn’t have to be perfect. Just let the words spill out. It will make you feel better.

Here goes…

Since coming back from the US I guess I’ve been a little lost. At first my poor ME / CFS addled body was in recovery mode and that filled my mind and took all my energy. But now as I start to claw my way back and see the light a little brighter once again, I feel a bit at a loss. I had focused on the trip to the US for so long; since last Autumn when I booked my flights. And now it is over and I am back in Lincolnshire at my mum and dad’s. Nothing seems to have improved or changed. I’m a bit stuck on some kind of ME / CFS plateau that I really want to jump off (upwards definitely not downwards or backwards).

I need a new purpose and aim to strive for. I need a new reason to reinvigorate my fight against this horrible illness.

Mr B and I have been apart for large chunks of the last few years. I have been at my parents so that I can be looked after and cared for in the way ME / CFS has demanded whilst Mr B has been in our flat in London. His job is there. His (our) life is in London. He has to be there. And whilst Mr B’s weekend trips up the A1 to see me have sustained me, and we have grown ever closer as we have faced the challenges that ME / CFS have thrown at us, we have been apart more than we have been together. And that is very hard.

Being apart and ‘long distance’ (not that a 3 hour drive is really that long a distant) was fine when it seemed like me being up here was a short term measure to get me better. But as time ticks on, it is ever more apparent that there is nothing short term about ME / CFS. Nothing, at all.

And so I have made a decision. I will give myself a few more months of care at my parents and then I will live more permanently back with Mr B in the flat that we own together that I pay half the mortgage on and yet have barely lived in since we bought it back in 2011. I know it won’t be easy and I will have to let a lot of things slide (housework, cooking, seeing friends etc) in order to be able to look after myself on a daily basis without totally knocking myself out and jeopardizing my progress to recovery. But needs must.

All I want, all I need right now, is to be able to live with Mr B again. He is wonderful, caring and supportive and would do anything I need but I don’t want to be an imposition on him. He has to live his life as fully as he can. He has a stressful job and an equally grueling social life (it’s all for work, or so he claims) ย I can’t be a burden to him. For this to work, I have to find a way of managing my illness myself.

My parents have said they can come down to help out whenever I need it. They are utterly wonderful. And I am so immensely grateful for all their love, care and support. I literally wouldn’t be ‘as well as I am’ (all things being relative) without them.

I need to feel in control of my illness. I need to control it rather than letting my ME / CFS dictate every little detail of my life. Even if I need a couple of weeks back up at my parents every few months to rest and recover a little, then that will be fine with me. It will be progress from where we are right now.

So I have my focus for the next few months. And that gives me a glimmer of light to look towards. I have to take one day at a time and slowly but surely I will beat ME / CFS. I will get back to living in London with Mr B. I can and I will. I am going to get much, much, MUCH better. But it takes time (a lot of time apparently).

For now I have to stamp down the worries, big and small, that have been plaguing me this past week. The huge daunting questions of: will I ever be well enough to get married, have children or to work again? They have to be banished and quashed for now. No one knows what their future holds but mine seems incredibly hazy. It is impossible to make firm plans for the future for ME / CFS and that terrifies me. The impact this illness has on my life is horrible, but it is unbearable to think what it could do to my relationship. It is not just my life that it is impacting on. But Mr B’s, my parents and my sister’s too.

I know worrying is bad for ME / CFS – that is a huge understatement. Worrying creates huge internal stress which undercuts any physical progress that I may be making on the outside. Stress is like oxygen to this disease. It seems to thrive and grow on it. I have to calm the constant chatter in my head. I can’t let stress take over. I must constantly bash down the little worries that seem to constantly flitter through my head. My Dad does not care if I read the book he gave me or not. I am not going to hurt his feelings by not reading it. I do not need to stress and feel bad that I took up so much of my sister’s time whilst I was staying with her. She said I was and am not a burden. I must believe that. I do not need to feel bad about Mr B having to drive for 3 hours on Friday night to see me. He wouldn’t do it if he didn’t want to. I do not need to take on my mum’s fluster and stress when she’s busy doing 100 things at once in the kitchen. That is just the way she is. So many worries. So little time. So little energy. Time to breath deep and take NLP by the horns and STOPย 100 times a day if necessary. I will beat these worries same as I will beat this damned ME / CFS. None of it is going to beat me. Die worries die! Die ME / CFS die!

So that pretty much sums up my week. As I say a lot of tears have been shed. No wonder I’m exhausted really, with all that nonsense swirling around and around in my head! But it’s out now. And you know what, my head does a feel a smidgen lighter, a little bit brighter.

I’m sorry if this ramble is hard to read, especially for those who know me personally and love me, but I just needed to try and clear my head. Brain dump 101 complete. Writing it turns out is excellent therapy.

Here’s to a happier, brighter and far less brain foggy next week.

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9 Responses to “Die ME / CFS die! Brain dump 101.”

  1. Jackie June 1, 2013 at 7:25 pm #

    I loved reading this and could really relate! Especially to wondering about having children and being a burden.

    • myjourneythrume June 1, 2013 at 7:35 pm #

      Thank you for your comment Jackie. Glad you can relate, tho I hope your head doesn’t feel as muddled as mine!

  2. Lydia June 1, 2013 at 10:06 pm #

    *hugs* no it makes so much sense (but maybe only to people who have been there, I can’t say for sure ๐Ÿ˜‰ ) I think that the decision to live back with him is probably a good one, for your own life and sanity. Not because it will be easy, but because it’s your love and your house and being away from that just adds pain to the pain of illness. Keep fighting x

  3. tiredtechie June 3, 2013 at 5:15 am #

    That sounds like a good idea. I think the most important thing with this disease is to start building a meaningful life for yourself *right now.* If you recover later on, great, you’ll have plenty of energy to start the next chapter in your life. But waiting for some future time for life to resume is something you might regret later on. Wherever you want to live your life right now as a sick person is where you should be. Obviously you’ll have to make adjustments and it can be hard to face up to the new reality but trust me, you’ll feel much better about yourself if you can create a full life for yourself despite the limitations of M.E. The future will take care of itself if you take care of the present.

    • myjourneythrume June 3, 2013 at 8:01 am #

      Thanks for such a supportive comment. You’re so right, I have to start living my life now, even though that life isn’t the one I thought I’d have, it doesn’t matter, I need to make the most of now. We must all learn ‘to dance in the rain’, enjoy the journey and all the other inspiring quotes to boot!

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