Thursday 23 August 2018

Between a Rock and a Hard Place

In the year I've been at group therapy (and I still have enough 11 month to go) my symptoms, especially my various types of pain and especially my fatigue have gotten worse because I have to put it aside to go to group even when when my body is screaming at me to stay home/in bed and rest and the staff there I feel don't understand or what to listen to my physical health stuff; they want me to leave it at the door and focus on my mental health (despite my physical health having a great impact on my mental health) and they blame my fatigue on my medication which is keeping me afloat and I'm saying over and over again "it's not my my meds, it's my M.E." [that's making me so tired] but they don't want to listen and I'm left feeling voiceless and wishing I wasn't physically sick. 

Yesterday I called up my contact for the Complex Care Team, she's just the admin but was very understanding when I explained my predicament with the group therapy staff not understanding or listening to me about my physical health and them wanting to reduce my medication (even though they're not Drs). Hopefully soon I'll be assigned a key worker in in team so I can have someone to talk to and help me unmuddle things (and have a big MDT (Multi Disciplinary Team) meeting with my care co-ordinator from the group therapy to explain and discuss my needs, physical and emotional) as I'm just declining and at the moment I'm wondering if I can continue with group therapy but if I do I will lose all access to mental health care and I can't do that so I'm in a rock and a hard place and my body is failing me.

Before I started the group therapy programme I was able to pace myself throughout the day. On my bad days I was able to stay in bed and rest and do what I can and I was able to spread my energy out thought out the day and get up when my body was ready and take rest/nap breaks when needed and do what needed to be done when I had full capability. Now jobs get left - my bedroom is a mess as I don't have the energy because my days off from group therapy are spent resting because I'm so drained and when I get home I just crash for the rest of the evening until I drag myself to bed because I'm forced to get up earlier than my body likes and leave the house and sit through groups and fight the fatigue and get moaned at because I'm nodding/switched off and my medication is being blamed when there should be more understanding of my M.E. and FND.

The group therapy staff are also putting stoppers in the way to me getting to rehab in Leeds which really angered me when they brought it up in my last CPA (Care Plan Assessment) and they want to speak with Professor Edwards (when I don't know what they're saying to him) about my mental health and how that might make my ineligible for the rehab in Leeds at this present time as they don't think I should be going because of the state of my mental health even though like I've said a big chunk of that is caused by my physical health, which just sucked away all my hope of getting some help for my FND and M.E. because I've been waiting for this rehab ever since I first saw Professor Edwards last year. I think I need to find out and request that I be kept in the loop with all conversations with Professor Edwards and the Leeds rehab centre to ensure the correct information is getting passed on?

I just really don't know what to do. I might have to take some timeout of group therapy if this hypermobility sessions come up so that might give me a welcome break to at least try and look after my body in-between travelling to UCLH.

I think when I go to group therapy later on today (it's currently 5.40am and I can't sleep) I'm going to have a conversation with my care co-ordinator about everything. For now, I need to try and get some sleep.