My Healing Journey 01.06.2021 …
Care Planning Session …
I pre-booked this session the minute I finished the Assessment & Formulation Session …, working it around YFC_J afternoon availability and some other appointments I have.
Preparation & Setting Up …
As soon as I received the write up from my assessment & formulation session I also received the login details for my next zoom appointment. It all feels very efficient and much better catered for someone with severe ME than I’ve experienced anywhere else before. This said, I have somehow lost all my emails and login details to access these. I feel like such an idiot but I had to ask for them to be sent over again.
What’s New …
The appointment is going to be 1 hour long, maybe with a break midway. It is to formulate a care plan we both agree is feasible and to advise what further testing areas I may need.
I’m guessing a POTS test and for me to go to the GP to get some H1 & H2 histamine blockers. Both of these things are something that I kind of already knew were wrong anyhow.
I’m also guessing we need to stabilise the dysregulation that is involved, which in my opinion is huge.
Plus, of late, I have had to do more physically and emotionally and consequently this has made me considerably more poorly.
What’s Important …
Progress … finally someone who really truly gets ME …
I feel that YFC_J definitely understands where I am coming from and he also gets my personality. I really feel we are going to be able to get along and work well together.
The Care Planning Session …
We had a mini catch up, which because of my husband needing an emergency heart bypass on the 06.05.2021 and me having to do more from the week before this episode as he was kept in hospital over a week prior to this, it was a much longer catch up than we originally had planned but very necessary.
It was, therefore, necessary to catch up and to also make some adjustments to the planned programme too. I found YFC_J extremely insightful as regards my over compensating personality style and my responses to the whole situation as well as my ability to trigger so much adrenaline in order to achieve the goal despite how unwell I feel. I think he gets me and ME.
After the catch up, YFC_J put up the whiteboard on zoom and wrote things down as we discussed the stuff that I would love to be able to realistically do and why I’d like to do these things too, as well adding the areas I feel that are barriers or benefits to me doing what I wish.
This is what we came up with:
what I would like to be able to do and why (I tried to be very realistic with these wants – we all know given the chance we just want our old selves back):
- I want to be able to take consistent and regular personal care of myself because it is a basic human right and because I like to, and I want to, feel clean and nice.
- I want to get dressed daily because it will make me feel more normal and that is how I want to feel, more normal.
- I would like to get my hair cut regularly, even if it’s biannually or even annually because it is part of self care and will make me feel much better about myself. Plus my hair grows exponentially for some reason. Why does my body put energy into growing hair but not healing me and fixing ME?
- I want go to the theatre & eat out because I find it defines me and truly recreates me, and I enjoy it more than anything.
- I want do the garden regularly because I enjoy doing it and I want to share in the upkeep of our home.
- I would love a part time job because I have so much to offer and I need to feel useful and want to get out of the house more.
- I want to see my grandchildren and family regularly because I love them and want to see them. Plus, I enjoy spending time with them.
- The illness is just so unpredictable I have no idea how doing stuff will impact on, or affect, my health, leaving me with no idea how I am going to react or feel from expending myself.
- I am really not good at working out when I am able to do and when I am not able to do stuff.
- I have so much fear of how poorly I may feel after doing things.
- I can’t control other people’s environment to accommodate my ailments and sensitivities such as sensory sensitivity related to chemicals or scents.
- My symptoms don’t present much of a barrier at the time – I can push through, and they don’t give me an idea of when will be too much. However, when it comes to the after effects – I am becoming more and more unsure if can get through psychologically – fear.
- I think I have reinforced experiences from the past – when I was a single parent and I had no choice but to push through. At this time, I wouldn’t and didn’t listen to my body until it was raging. I always hear my body after the event, and I only have knowledge of what ‘could’ happen before.
- If I listen to my body it is telling me to stay in bed everyday – but I feel unclear when I should or shouldn’t do this. Plus I can’t stay in bed all day, everyday, due to the boredom it will create. The only time I do this is when I have a full on migraine or was unwell with a serious virus.
- Not able to eat sufficiently due to symptoms, control stomach by limiting food.
- I will feel more normal, and I will be able to look after myself, and feel much better about myself.
- I will get to enjoy the garden and taking part in house upkeep.
- I will get to enjoy and have a bit of a life.
- I will get to enjoy being a grandparent and the freedom of this.
- We will have special entertainment of going to the theatre and eating out together.
- To have some kind of balance and normalcy to my life.
- Learning to listen to my body and ‘giving’ in to it – giving my body what it needs.
- Finding a way to meet body’s needs whilst also meeting my psychological need to be doing / addressing need to be doing.
- Work out the balance in demand and rest and activity.
- Start to feel physically better.
- Start to feel psychological better and accept the illness.
- To have some kind of balance and normalcy to my life.
- Individual Plan …
- For me to update my GP with copies of YFC letters and suggestions and to sort out tests and anti-sickness / anti allergy medications for when my stock of syndol run out …
After The Care Planning Session …
What I noticed from this session is that I found it very difficult to discuss what I really want and what stands in my way because I feel that I am being unrealistic in my wants and that I am being stupid in addressing my barriers. This is because I know, I really do know, just how poorly I actually am. Plus, I know what I need to do I just don’t seem to do it.
If I were to be really honest, all I really want to be is well again and to feel normal, which is very unrealistic when you know this disease. And considering that I have been ill for over 35 years it seems silly to expect, or discuss, what I want because the illness decides all the way.
The Here & Now …
Right now, straight after the session I have to change my PJs because, of the amount of adrenaline I needed to trigger in order to engage, I sweated so much they were wet. I have a massive headache and have to take my pain medications and lie down. But I will be back …
By the evening I was incredibly unwell. I had major PEM by 15:00 and so went to bed at 19:45 feeling extremely unwell and fearful of how I might be in the morning.
The Day After …
02.06.2021: Major migraine … I will be back tomorrow …
03.06.2021: I have recovered enough to write this session up as a draft. Phew I was unwell yesterday. Really unwell. Initially, when I first woke up at 05:05, I wished I were dead, and ended up taking my pain medications over an hour too soon but I couldn’t cope with the pain levels and the levels of illness / poorliness I felt, but now I am happy to say I am glad to be alive again …
What a rollercoaster this illness is …
This time the PEM came on within a matter of hours and I expect it will stay with me for weeks because I have to start caring for my husband again tomorrow. I will be so relieved when the six weeks is up and he is discharged and can start to do stuff again.
An indication of how serious this illness is can be seen when you look at the timeframe of a mere six weeks for my husband to be discharged from major open heart surgery and twelve weeks to total recovery. Compare that to years and years of getting sicker, then thinking you’re maybe getting better, to then feeling like you’re dying and absolutely no correlation between your rest / activity to your wellness / sickness levels.
What a mind f**k …
What Next …
We are hopefully looking at me starting the stabilisation programme, in order to re-regulate my dysregulation, sometime in July. My next appointment will be 07.07.2021. We have purposefully left that amount of time from this appointment to the next one because my husband’s six week review is on 18.06.2021 and this allows leeway for me to recover somewhat during that gap or for me rearrange the appointment if my husband isn’t discharged or if I am not recovered enough to have the appointment.
I will document as much information as I can in the next blog post in ‘my healing journey’. Please be aware that any information I share will always follow data protection guidelines and will never be enough for you to substitute it for your own programme
Can You Help With Costs …
Please go to my ‘fund my healing journey …’ page to donate.