Specialist Team for ME/CFS

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Specialist Team for ME/CFS

Postby Jeany » Fri May 16, 2014 10:20 am

I am lucky that I now have a whole team of ME/CFS specialists working with me. I have only had 2 appontments so far, but eventully they will decide on what they can do to help relieve mt problems, and give me a better quality of life.

The team includes an occupational therapist, physchiatrist ,specialist nurse, doctors, dieticians, therapists, and many more.

They are trying to build up a picture from my past and also what my symptoms are, and when they started. Once they have enough information the whole team hold a meeting to discuss what treatments they can offer me.

At my last appointment it was quite distressing and exhausting because they were delving into my past from my birth through to the present date. I know that there is evidence that these illnesses are psychosymatic, and I have always felt very insulted when people have said this to me including a physchiatrist, but I know what they mean now.

Being forced to drag up and discuss MY LIFE has got the old cog wheels a turning, and made me realise just how much I have had to face, and how long I have had to stay strong for. I don't want to go into detail, but one person can only take,so much before cracks start showing, and I did suffer a complete breakdown before I was diagnosed with CFS/ME and fibro plus I have other stress related illnesses. The mind and body work together, and adrenalin overload from constant stress of work, family and relationships etc do have an effect on your phsical well being also. I used to think when people said it was psychosymatic that they meant we made these illnesses up, and should just get on with life and stop moaning like other people do, but now I see the link, and the need for help and believe me I am going to grab it with both hands.

I am learning that I NEED to be kind to MYSELF, and to take care of not just my physical needs, which I have always kept an eye on ( exercise,healthy diet) but to be kind to my mental needs also. To do things that give me pleasure and make me feel good, and that does not have to cost a penny. Peace of mind is a wonderful thing.

I could rant on forever, as I feel I have hit a learning curve, but enough for now. I will come back and share my knowledge at a late date, and let my friends on this site know how I get on with the specialist team.

Take care and have some lovely soothing thoughts x x x
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Re: Specialist Team for ME/CFS

Postby FluppyPuffy » Fri May 16, 2014 11:33 am

It's good to hear you're already feeling some benefits from working with the team Jeany. Having access to and support from people who listen properly and are able/prepared to try and find a way to make things that bit easier to handle is a real boost. For me, being able to work with the CFS/ME Service in my area made accepting that particular dx was now part of my life much easier than I had found accepting the FM dx. Some of the things I covered during my time with them I found I could also apply to FM, which also helped with accepting that a bit more than I had been able to do so previously.

Reaching back into the depths of your life and memories does leave you feeling drained/exhausted and emotional, but once you have started to come back round from that stage, and start thinking about matters with what you have covered in mind, it can make you feel so much more freer, easier and calmer :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

The being kind to yourself was something I struggled with initially, but doing it more and more helped me realise just how important it is in life, to the point now where if something or someone stops it happening and/or makes me feel selfish about doing so , it leaves a real bitter taste in my mouth as it has taken me so long to realise/acknowledge that it is OK for me to be like that for myself.

It will be interesting to hear how you go on over your time with the team, and also what ideas they come up with for you. You never know, something that you share with us on here could help make a difference to others too :cow-wave: :cow-wave: :cow-wave:
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Re: Specialist Team for ME/CFS

Postby Pamela600 » Fri May 16, 2014 11:36 am

Can I ask how you were referred to the specialist team and do you know if teams like this are available elsewhere?
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Re: Specialist Team for ME/CFS

Postby FluppyPuffy » Fri May 16, 2014 11:45 am

My referral was from my GP. There are similar services available in other area, but what they offer can be varied. Your GP should be able to give you an idea of what is available around where you are, or you could have a look on your area's health authority website to see what you might be able to access and how you need to go about it.
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Re: Specialist Team for ME/CFS

Postby Jeany » Fri May 16, 2014 2:23 pm

It was my GP Pamela, but I think it was because I was getting much worse, and my GP had no idea really about my conditions.

These teams are only available in certain areas, so I know I am very lucky, and the team are wonderful warm caring people. Give your doc a call. I myself see the Leeds team.

I will give you all regular updates, but I only see the team every 4-5 weeks, so be patient guys x x x
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