This week’s been ‘one of those weeks.’
It started with a day on Monday that knocked me sideways, or should that be, laid me flat. From early in the morning as I got up to get ready to see my counsellor I could tell something was wrong, really quite different and wrong.
My back and head were squeezing and clenching as if in a vice and everything in the world around me was tenuous. When I stood up, I wavered, when I lay down I felt sick.
“Hmmm,” I thought, “Maybe I have a virus, a migraine, muscle strain, haven’t been eating enough carbs or sugars…or…..maybe it was a symptom of ME?”
Without knowing what my exact ME symptoms are (because no-one in the NHS ME services has ever told me in favour of delivering the psycho-social model ) I decided that perhaps what I needed to do was get some fresh air and walk it off.
“I’ve done Graded Exercise Therapy, I know what my baseline and limits are, I can do this,” I thought before packing a bag and leaving the house.
En route to seeing my counsellor I had planned some essential tasks to do, ones that I have to do when I’m in shops, the post office or at reception at a friend’s workplace – she’s leaving town in a week and I had a CD to return. I’ve either been busy or not well enough to do that before. That was an additional motivation to get up and at ’em!
In the old days when I used to get stressed or had something to think about or had a hangover, I used to go for long walks…
Since having ME I go for short walks, as Graded Exercise Therapy suggests you should and can do, which it did when I did it. The thought in my head was what the NHS CFS Clinic told me: “You have a baseline of activity. You must maintain that. Do this 5 days out of every 7.”
By the time I was past the post office I was not feeling at all good but something from the old days kicked in. I started putting one foot in front of the other as if I had a hangover, or was stressed or had something to think about.
I reached town. For a moment everything went blank and I headed to the nearest wall to sit on. My head went into my knees to try and stop the dizziness. I took an apple from my bag and started to eat it, thinking the sugars may do me good.
“I have to drop off the CD and go to counselling,” was all I was thinking. “Get the CD dropped off and get to counselling, then you can sit down and decide what you need to do.”
I was already realising that I might not be well enough to do anything, let alone continue with the day.
I dropped off the CD and kept walking, focusing on getting there. When I arrived I collapsed in the room. My counsellor promptly rang a cab and returned my fees for the session into my hand and I crashed on the back seat when it delivered me home. Since then I’ve been really very unwell. Today’s the first day I’ve felt near to normal again.
What about the friendship and boundaries angle to this post?
Like many people I read and know who have CFSME, installing boundaries, or limits, into relationships since having this illness has come about through trial and error.
The point I make about not being given targeted treatment advice about CFSME from the NHS CFS Services affects this aspect of life also.
It’s through trial and error and life experience since I’ve had ME that I’ve learned about setting boundaries. A lot of work I’ve done with my counsellor has been about this also. It’s linked with self-care.
Before CFSME I was a person who pretty much sailed the way the wind took me. I was impulsive, open, adventurous and willing. I was out and about more than in, I was proactive and creative, I always put my friendships and relationships first and spent a lot of time thinking about them, investing in them and sorting them out if they go wrong.
Since having ME and particularly the big crash over the last 2 years, my life has gone into the reverse side of those things. Much of my time is spent alone. Many of my friendships have gone by the wayside. I don’t prioritize my relationships any more, except the relationship I have with myself to deal with having ME.
The friend I returned the CD to, was one of those friends that has remained in my life over this time.
I thought she understood how things were, I’ve talked about it on a general level with her over a long enough time. Also she has a history of depression and she’s gone through a lot and although she is OK, I think she’s the example of having an illness yourself, giving you insight into others.
She’s been clear with me over the years that she can’t go out because she needs a night in, or that she just needs to be alone, or that she’s stressed and needs to rest. I’ve never taken it personally and although that means I haven’t seen her as much as I’d like, we’ve seen each other when it’s been possible on both sides…..
When she met the man she’s moving in with (and moving away from my local area) she became busy with him. She’s been busy with him a lot and again, I get that, after all I’ve been in relationships too. But I’ve noticed that particularly over the last year, when we’ve arranged to see each other, more often than not she’s cancelled, saying she’s not well.
Sometimes she’s told me that she’s cancelling because she’s sick and she knows I can’t be around sick people. So that’s understandable.
Sometimes she’s told me that she’s cancelling because she’s having a bad time at work and she needs to rest. Again, I get that, it’s annoying when it’s short notice, but OK.
Sometimes she’s told me that she can’t make arrangements to see me because she is waiting to hear from her boyfriend and she can’t plan. OK. I’m not happy about that and I’ve said so, particularly when the arrangement for me has meant a lot of work and planning, for her simply means a cancellation.
Sometimes she’s got in touch with me and said: “are you free? I am.” Sometimes I have been, but since Christmas I’ve not been. I’ve been prioritizing self-care, my social arrangements and doing the things I want to do to have a better quality of life.
That’s the honest truth. I’ve been taking time for me for the first time properly since I’ve had ME.
THAT’S a big change 🙂 and yes, it makes me feel loads, loads better.
Last weekend I made time throughout the weekend because she was free and was going to come to visit me at home. On Saturday morning she was again unwell and cancelled.
Making assumptions, limits, boundaries, relationships.
Doing work on boundaries in counselling is really hard work in my relationships. It affects them because the person I was to people is not the person I am now.
I have a disability that makes me unavailable in the same way that I was when I was well. I also have to be clear to people that I’ve got limits to what I can do and when.
It must be hard for people who’ve previously heard: “Yeah, sure, I’ll be there, no problems. See you there!”
To hear: “I have to live my life to a pattern and plan things in advance and it doesn’t give much room for spontaneity, I’m sorry to say. When I arrange time it’s a bigger thing in terms of what it means for my health and well being than it is for someone who doesn’t have CFSME. ”
Or, as I said to the friend when she suggested I might be free this coming weekend to meet the boyfriend she’s moving in with:
“I’m not free because I’ve got a family event on Saturday. That means I have to rest on Saturday night and because of something called post-exertional malaise I’ve cleared any arrangements on Sunday. I don’t go out in the evenings anyway and so Saturday night wouldn’t be possible. So I’m sorry I can’t meet him, but I do hope I do sometime.”
And after dropping off the CD I added: “I’m sorry I didn’t text you in advance to tell you I was coming. It wasn’t a good day for me on Monday or I’d at least have stopped to say hello at Reception.”
Well, folks, this is the first time I’ve said either of those things explicitly – set firm boundaries that is.
You might argue that I shouldn’t have said them, but I felt I needed to. I’m practicing how to do this and what to say, so I may get it wrong but I think what I said was all right.
If you set a boundary, expect anger…
I used to say this to people but this week I’ve been thinking about it again in the context of this situation. Since getting both messages from me, my friend has, in a very polite and individual way to her, told me to Fuck Off. She says she DOES understand how my ME is for me, that she knew I was busy on the weekend and wasn’t expecting to see me and that she herself has now ‘run out of time physically, emotionally and spiritually to see me before she leaves.”
She added that she thought that I should have cancelled my plans or made more of an effort to see her as I’ve know for a while that she’s moving away. Bye Bye Lindy was the implicit sign-off.
Like many people with ME, stress, particularly emotional stress, has a negative effect on my symptoms.
I did reply to her communications. I didn’t get angry, nasty or vitriolic and I said I couldn’t see what else I was meant to do – after all, I’d kept time clear for her last weekend and had arrangements fixed when she’d tried to see me before.
Inside I feel the scrumple of stress that has come about since I’ve had ME. My sleep patterns have been affected.
Today I’m sitting back mulling over it all, considering the sadness of miscommunication, the anger that comes about when setting new boundaries with people and the effects of ME that, to anyone reading, can see are all pervasive and affects your mind, health, heart, feelings, thinking, body and soul.
Self care and boundaries isn’t selfish or rejection
This has been a long post because I think it shows how difficult it is when you have this illness to explain it to others in a way that does not make it sound like rejection or selfishness.
It’ll take me a while to get over this loss and I’ll be thinking about it for a long time and no doubt new insights will come.
But one is clear: I am absolutely certain that I needed to say what I said and I’m pleased with myself for doing so.
Today at 1:00 I’m having tea with someone who is new in my life. As one friendship door shuts, another opens. With this new friend, I’ve already set boundaries and they’ve accepted them with no problem at all.
In your relationships, there is light and dark and lots of shades in between. Having ME makes them more so. Self care is really important though so you can enjoy the rainbow and have a well-life in between.
Copyright Lindy 2016.