Where I am at with my ME/CFS

Brain and nerves
1

Following on from the post I made about not wanting my old life back, I have come to realise that I am pretty much happy with where I am with my illness. Please bear with me, if you can bear to.

Before Mum died I was back to about 75% recovery. Since she died I have not managed to get back to where I was, I would say between 55 and 65% most of the time. Thanks to my GP and the clinic I go to I have learned about living with, and managing the illness. The Physical Illness psychologist I saw for quite a few sessions helped with this a lot - thanks you Sharla.

I know now that this is me and to strive for more is futile, in fact as I have said before, more is not good for me. This is the life I have now and this is the first day of it. I have decided to embrace what I have and make what I can of it.

The group I went to yesterday was quite negative in parts, and I am not blaming the people there. I was once very negative and one poor woman had only just begun her journey and was feeling awful. But it was her 'there's no hope for me and I feel so sorry for you all' attitude that set me thinking. My negative approach and constant wanting things to be different have had a detrimental effect on my ability to live with this condition.

I have decided to embrace it, it is part of the package of who I am and I have decided to be thankful for what I can do and what I do have. That is not to say I will not complain when I feel rough, I don't feel that good this morning even though the sun is shining, but I really want to try and get out of this 'if only' mentality that I have developed for so long.

Exhaustion, aches, pains, dizziness, confusion, head symptoms, IBS, they are here to stay (and that's not being negative, just realistic) and I am going to stop striving to be rid of them all. From now on they are a part of me and if people cannot get to grips with that then I can't help that. Those people probably have no part in my life.

If you have listened, thank you. It was good to write this down and explore it, sort of consolidate it.

I used to be like the sad lady in the group yesterday, I have come a long way and I thank God for what He allows me to have.

:D

2

Well at least that's one very positive thing that has come out of your meeting yesterday, Alicia :D

I can see where you are coming from (I absolutely hate that expression!) but my brain is very muddly today so forgive me

I don't think I am quite ready to embrace my life as it is today, but I think for you and I particularly, due to our age, :roll:... it is probably a very sensible and realistic approach.

I would say I vary between 40 - 60% of my former self .... but I am sure that if I paced myself as I should, I could actually improve on this. I know there are times when I 'push' myself much too far physically because I have an absolute fear of ending up a big, fat blob. But that's just one of my hang-ups (hate that word too) and I honestly think I am stuck with that

Yes, we do have an awful lot to be thankful for (just watching the news these days makes you realise that), and for that I am grateful. But I certainly wouldn't expect some of the younger ones afflicted by this wretched illness to feel that they should embrace it too. They still have so much of their lives to live ...... it just seems so very unfair, and made all the worse by having a condition that many others do not understand or even try to

But thanks for sharing your feelings with us Alicia .... and I'm really pleased that you feel as you do :D

3

[quote:09ff74ede9=\"katie.k.\"]. But I certainly wouldn't expect some of the younger ones afflicted by this wretched illness to feel that they should embrace it too. They still have so much of their lives to live ......

I totally agree Katie. that's why I titled this post 'Where I am' :D

4

Alicia I am glad you have shared this with us. It is a really positive thought and seems acceptance of the illness. I wish I could be strong enough to face the illness straight and to work with it instead od against it.

5

LouLou, it has taken me 7 and a half years to get to this point. I am a slow learner :roll:

6

Alicia that was so moving, i read it right to the end smile

Its good when something happens in our life that makes us stand up and be counted. :?

As ME is new to me and i am suffering more being back at work and even dancing or driving too much gives me pain, i think it will be a while before i accept this illness.

I am missing out in so much. :twisted:

But thankyou for sharing your experience with us and being so brave and i really do hope you can continue with your enthusiasm. :lol:

7

Well alicia I have a few years to go. I have only been ill 2 years and it took them a while to come to this conclusion. Reading your piece this afternoon really moved me. It made be feel humbled to be a member of this forum to have the support of this forum. Hace to go filling up again.

8

Support is essential. Sharing with people in the same situation, and receiving input and different aspects of other peoples experiences really makes you look at things from other perspectives rather than an introverted one.

I doubt I would have got to this acceptance without my psychologist's input and all the input I have received on this lovely forum so thank you, all of you.

And when I have a bad day and start talking negative I give you permission to send me back to read this post I have made.

Chronic illness really is like a grieving process and you have to go through all the different stages, and it cannot be rushed.

Group hug :hug:

9

I shall be grieving for this forum soon, it seems to be struggling at the moment and I am very sorry.

I hope you are all as well as possible and I am thinking about you all. :cuddle: :hug: :rose: :love:

10

Yes, so will I

Think it will just consist of you, me and LouLou soon, Alicia :wah:

Come on folks, where are you :huh:

Hope everyone is okay :?

Katie :hug:

11

Hello, maybe I could join in too?

I've been reading your posts for ages but have never joined a forum before so I am very new to it all.

Without you knowing, you have kept me relatively sane over the past few weeks, and often made me laugh.

I loved what you wrote, Alicia, and it's what I'm trying to do.......then I have a day like today when I feel so ill and just want to do \"normal\" things, and all my \"acceptance\" goes out of the window and I feel so :cry: . Still, it's a case of hanging on in there......

Katie, did you ever have Horlicks tablets when you were a child? They used to sell them in chemists' shops and from what I've read, I think you would have loved them! I certainly did :lol: Wish they still made them.

Daisy (a \"Saga-member\"!) x

12

Hi there Daisy :D

Hey that's really fab ....... do come and join us :magic:

And as for being a fellow Saga member ...... well that's even better 8)

Boy, do I remember Horlicks tablets :D Didn't dare mention them after everyone else had yucked so much about the stuff :roll: They just don't know what they missed ...... wonder why they stopped selling them :?

Gosh, have you been following us for ages ? :oops: It's great to know that we have really helped you though ....... I think I would honestly have gone completely round the bend if it hadn't been for this fantastic forum.

So you obviously know a little bit about us all ...... and hopefully you will join in our friendly banter when you feel the need :D

Take care and hope to hear from you again soon :D

13

Dai - sy, Dai- sy, give me your answer do :whistle:

Please say you'll come and join us, don't just watch from the wings. You are so welcome, we love newbies. :biggrin:

If you have been reading secretly and still want to join us then that is promising. We can be rather craaaaaazeeeee.

So you are a Saga member too, lovely to meet you. You, Katie and I can have a threesome - no, wait, I didn't mean that, come back. Aw 'ek, I've mucked that one up now. :oops:

Seriously, please tell us a bit about yourself and your experience with ME/CFS. I am away next week but I am sure we shall chat soon. Glad we have helped cheer you up. :D

14

Hello again :D

Thank you for the lovely welcome! I would love to come and join you!

It's been so helpful just being able to read everybody's posts even though I hadn't been brave enough to join in until today.....

I used to be a teacher and I think I should have doled out Horlicks tablets to all the children at the beginning of each day; it might have calmed them down a bit ! (oh, maybe the \"powers-that-be\" found they were addictive so that's why they disappeared?! :shock: );

Anyway, I'm very very glad to be on board; going to have an early night in the hope that I might feel better in the morning.

Night night 8)

Daisy x

15

Night night Daisy, night night everyone :sleepy:

Cripes Alicia .... please don't put Daisy off with your singing :shock:

We might never see her again :erm:

Just kidding :D

16

See what happens when I turn my back ora few hours you all see to come out of the wood work. I have just woke up on the settee have been asleep hours, I have missed all the good tv but never mind. Pleased as always that you have decided to join us Daisy. It seems strange that you know us from reading our posts. Glad you have decided to join us, especially because things are a bit quiet at the moment. :D

17

hello daisy, nice to meet you! :D

alica, that was a very moving and wise post. i think at the moment this is still relatively new for me (7 or so months) and im not sure what's going to happen. im still hoping that, as im fairly young and have caught it early, i will make a good recovery. my doctor is certainly optimistic and lots of people i know have got, if not 100% better, then certainly 80%. heck, i'd take 75! :roll:

however, there are certainly things i can take from what you've said. i need to start accepting the way i am right now if im ever to get better. mind you its hard on your own - i could really do with some psychological/medical support with this one.

but at least we have you and your words of wisdom! thank you for being so candid :D

Trees x

18

Thank you Trees, glad it helped you.

I realised I was talking a lot of nonsense each time I logged on so I put my thinking cap on and thought it would be good to share something helpful. :D