So it turns out my awareness of my thoughts was barely scratching the surface. I’m grieving. I thought I’d done that and reached a place of acceptance but grief is not linear. Who knew?
I am also being quite hard on myself with these thoughts. Particularly when I tell myself that I should be able to do something. There’s a lot of shame around my limitations. I know I often hide my limitations, I will show people that I’m doing ‘ok’ and try to play the role of a healthy human while with them. I try to hide the pain I’m in, the intense recovery that follows me pretending I can do things – the consequences. Because I don’t want others to pity me, when I feel shame and enough pity for myself as it is. I don’t want to ask for help because I don’t want people to know the depth of my struggles, or to appear ’weak’. Especially when I keep telling myself I shouldn’t have to ask for help in the first place, I shouldn’t need it.
But of course I do need it. My reality is that I don’t get washed and dressed everyday because I can’t. I don’t walk Bella daily or even weekly, because I can’t. I get behind on my laundry, because I just can’t do it sometimes. Some days, like one day last week when I was home alone, I had to lie there feeling hungry because I just couldn’t make myself lunch. I couldn’t make myself lunch because I had no energy and I knew I needed to be able to drive myself to the doctors at 4 for my B12 shot. I couldn’t do both. Sometimes I don’t eat a whole meal because I haven’t got the energy too. I sometimes have to sit on the stairs until I can complete the trip up/down. I buy clothes based on how much energy it takes to put them on – low energy clothes and shoes because I can’t waste all my energy getting ready if it means I have none for where I’m going. The walk round the block should take 2 minutes, it takes me at least 10 and a break. I struggle refilling mine and Bellas pill boxes – I get confused, I lose count, my hands cramp, go numb or become really painful and inflamed. One day an item of clothing will fit, the next it won’t. Sometimes I can get my rings on, an hour later they may be stuck. I struggles to lift a full kettle, I have to use two hands. Often my tremors mean using the kettle is a no go, knives too. I have to sit down to chop ingredients when I do try to cook. The standing at the cooker part has to be minimal and will require me using the counter to lean against. I struggle to whisk Yorkshire pudding batter. I can’t lift Bellas dog food delivery anymore. I sometimes get stuck in the bath or my recliner. Sometimes even my bed. Sometimes I’ve needed help dressing or washing my hair. The burning pains in my hands, feet, legs and arms used to only become unbearable in the evenings, now it’s constant and there’s only so much I can do to help it.
What people may see sometimes is me pushing through and doing these things to appear ‘normal’ but not the cost that has. I could have pushed to make myself that lunch and gone to my appointment, but I would have suffered immensely and for days, when I am already suffering immensely. I could have prevented myself being able to drive there or back safely. I could have increased my risk of falling or failing. It’s knowing what I can and can’t cope with doing. I can’t make myself meals daily, 2 or 3 times a day. Not even once a day.
Yesterday I got snappy with my family who wanted to make my bed for me. I’m very particular about my bedding, everything has to be just so. The corner seams must line up, the label on the sheets has to be at the bottom of the bed. There are straps underneath my mattress which attach to my sheets to keep them tight because I can’t cope with loose or creased bedding. My duvet has to line up along the seams, it can’t be loose or wonky. My pillow has to be a certain way round. They wanted to help and I insisted on doing it myself, which is a mammoth task on a good day and I’m not having any of those right now. But they’d done a lot during the day, so surely I should be able to make my own fucking bed when I’d done nothing? I even saved and bought the bed that would make this easier. Now I’m paying the consequences of doing that, plus apologising to them for being a bit spicy. I wasn’t mad at them, I was mad at my own limitations and how much pain it was causing me. But my bedding was perfect and I finally had a good nights sleep, but at what cost?
So yes, I do get envious of others, I do feel bitter. It’s not against them, it’s against myself. Neither is right or wrong, it’s normal to feel that way. It’s how I deal with it, think about it and manage it that currently isn’t right.
So each evening I’m going to say what I’m grateful I managed to do that day. I might post them here, I don’t know. But I need to try and do this to change my thoughts into looking at the positives rather than giving myself a hard time.
Today I’m grateful I didn’t cancel my therapy session and got to attend and sit up for the full hour. I’m also grateful that I have another B12 injection later that could give me a chance at feeling a bit better.
I also reached out to a friend immediately following therapy (following Lee’s advice) and asked for help with my PIP review form. I didn’t want to because I don’t want others to know how much I actually struggle, I didn’t want to face it myself, but I need the help. Both with the form and from receiving the PIP itself.
I know currently I am at my worst physically and that’s likely where a lot of this is coming from. But ultimately I am always going to grieve what I can no longer do, who I no longer am and feel a little jealous of others who do get to perform actions and activities without ever having to think twice about it.