So for one reason or another (not important) I had a big snotty crying session last night and had a ME outpouring during which I learnt some interesting things. Sometimes even when I feel I have a good handle on things when something triggers a big cry it’s like a hidden compartment pops open and I discover all these thoughts and feelings I have about things.
What I learnt last night was:
- I am paradoxically basically happy in my core but aching and hurting about my life/ME situation
- I’ve been thinking a lot this past week about the improvement of my condition compared to 3 or 4 years ago (my cognitives, communication, migraines, pain, sleep, recovery from exertion, energy levels are all a lot better than they were and at rest symptoms are a lot less oppressive) but realising that this doesn’t add up to squat while I still have my illness effect every apsect of my life including personal relationships, inability to work or be productive and being stuck at home without being able to care for my home or myself. This progress is almost irrelevant in the grand scheme of things because I’m not really much more functional than I was.
- I’ve set myself a sort of vague aim for trying to maximise on the gains that LDN has given me feeling that perhaps I wasted opportunites to build on this in the last year. I’ve set myself this aim of trying to do gentle stretching and movement with the aim of perhaps being able to go a 2-4 minute walk daily down the line. I’m giving myself the year to work on this. Last night I realised that this will be a massive effort and require patience, dedication & diverting of energy from other things to achieve but will also be a relatively teeny tiny achievement. I can fight for a year and still be only able to walk for a few minutes at a time. Big wow.
- I realised that 2 and 3 indicate a massive resentment about my illness and my situation. I’m not even measuring myself against 100% healthy when I belittle my improvement and efforts – I’m measuring against my pre-crash levels of ME where I was around 60-75%.
- I’ve been montoring myself for signs of despression setting in because I’ve been wrestling with all this crap for say 6 weeks. I’m pretty sure I’m keeping on top of depression creeping back in, flexing my CBT muscles but I’m dangerously close to that place where you decide to just let the black cloak wrap around you. I do not want to go back to that place and I will fight what can seem like the easy option to give in to the sadness. But I recognise that there is a fight there going on.
- Not creating art is probably having an adverse effect on my state of mind as I’m lacking that outlet and also the sense of achievement and productivity it gives me. But equally the state of mind isn’t helping me to find ways to create art. Hoping that this release of inner bits and bobs might free something up a bit as last night I was having vague ideas about the direction my work could take. To vague to start painting today but more than I’ve had in the last month.
- My husband is under tremendous pressure and my job (as I see it) is to be supportive and to not add that. My most helpful things are to not cause him uneccessary worry or concern, not overdo things so he has to pick up the pieces and to leave enough energy to listen/encourage/support. But the strain and responsibilities he shoulders, often in order to allow me to reside in a world where I am protected and cushioned, that pressure on him scares me. I feel, and in fact am to a large extent, helpess to share the burden with him. I actively have to add to the load often because I can’t (thanks to ME) do certain tasks, like for instance talk to our landlord, because of the physical response I get to the stress of it. I am scared for him being under so much pressure and I feel responsible. Things are worse right now because his job is being made redundant in July and he’s looking for work in a profession that’s experienced a lot of budget cuts so there’s a lot more competition and because he’s not happy anymore in the job he’s doing at the moment. Plus he’s looking for work he’ll enjoy, will pay good enough to support us both, suitable to give enough to his caring role (so no long periods of time away from home) and therefore preferably local/commutable so I don’t have to find another GP and we can stay close to family. Feeling stressed about his stress levels isn’t helpful for either of us but that’s what’s been happening like it or not.
- My ME, the nature of chronic illness and being housebound whilst also not very productive brings with it a change in how I am. I relate differently. I settle into the security Growler offers me in my cushioned world and sometimes I push too much without knowing it. Two years ago my New Year’s resolution was to not volunteer Growler to do things on my behalf. I would say “Oh Growler will drive you there” without asking him using him as a substitute me. He’s not a substitute me and now he has caring for me to do on top of everything else. So I have learnt not to do that anymore and to suck up the times I want to volunteer to help and I can’t do a thing. Last year my resolution was to stop picking away and being negative. I thought I was being devil’s advocate or helping things/Growler to be or do things better by saying “Yer that’s good but why don’t you …” I was actually undermining him, micro-managing things and not trusting him to do it right. Not because I didn’t think he was capable but because I was living out a part of my life through him. I was trying to do a task with him by negotiating how we would achieve it – but actually I was driving him mad and not letting him get on with things. I had to learn that when someone else has to do the job you have to let them do it, you have to let go and let them get on with it. Growler got really angry last night because I was doing this again but really I wasn’t and really he was angry with work and himself and the world being unfair and all those frustrations that get bottled up and explode in the face of someone you can explode in front of safely because they love you. But it did set me thinking about how I may in other ways still be trying to live a part of my life through him and how I need to address that. It’s hard because it strips away another layer of leaving you helpless, attempting to sit serenely while others “do” instead of you. I want to cry just thinking about it. This illness leaves me with so little already losing anything else hurts. But keeping my marriage happy and healthy is even more important. As is finding strength and usefulness and peace of mind in the right ways and not from living through other people. I can’t put my finger on what it is I need to work on but I can keep my ears, eyes and heart open to find it. And in the meantime try not to let the knowledge that the way I relate to the world after 4 years sitting at home is drastically different to how I used to be. By example I offered help to Growler with job applications and his CV but suggested really he should ask friends and colleagues because I am now so out of touch with the ways of the world out there beyond these walls. It’s gone from a world I am seperated from to a world I don’t really know.
- Finally a heartbreaking moment from last night’s outpouring. We spent the evening with my dad and his partner at the weekend and stayed overnight. Something he said to me, which I now forget but which isn’t important, triggered a notion that he really doesn’t understand what my life is like. He really doesn’t realise how every moment of every day is restricted, limited and ill. That it never ends. That I continue to exist with ME, stuck at home, even when he’s not thinking of me and when life is carrying on. Then I realised that no-one (except for PWEM and maybe Growler), no-one in my family, of my friends, no-one really knows what it’s like and how I live. The crushing reality of it all. The not knowing. The time stretching back of day after day. And then the crushing moment – they don’t want to know because it would be heartbreaking. It is crushing to consider the reality, the relentlessness of it all. And in truth I don’t want them to feel that and I don’t know that it helps anyone. The majority of the time I don’t consider it as anything other than normal, typical. I just live the life I have and am not oppressed by it. Because if I stop to look at it really hard it crushes my heart and my spirit. But it leaked out yesterday – the pain of this situation and of the knowledge that it might always be this way to a larger or lesser degree. I’ll never be who I was again. I’ll never fully be able to do whatever I set my mind to because there will always be limits to be considered. I’ll never fully share the burden with Growler. I may never get back to being in the big world again. Here’s the silver lining though – emotionally I am far better person that I used to be so why would I want to go back to who I was? Only the physical possibilities are what I want back. I have learnt so much about myself, life, others, compassion, patience, acceptance and that who we are is more than what we do. It doesn’t stop the burn of the relentlessness of ME but it is some consolation.
- Finally last night’s outpouring reminded me how much I love my husband, how much he leaves me and how a good old snotty cry can be most educational.