I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day. Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up! I go to bed early, but then get fed up of being in bed because I can't sleep and then need to get up because I am in pain or my mind is driving me mad. I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too. I was in bed at the same time as Emily, but then only got about 4 hours sleep. I can't sit down for long as its uncomfortable, but I can't move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn't want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs! If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much. I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can't sleep and so it goes on.
What should I do with myself. I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy. Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them. My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.
But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can't take part or can't follow conversation. Then wonder why I bother and come across as being ignorant and or stupid.
I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.
I know that I need to do much less, but things just pile up, I don't work, I don't do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me. I have just had a letter from the council saying I need a review of the money that pays for my care and help. I need that money to exist, but the effort of justifying it is so hard. Last time they took quite a bit of it away from me, I expect they will do the same again. I know the government need to make cuts and that we can't expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it. I don't have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can't afford to pay for it myself. There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.
I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that's not fair to him. I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn't care for himself let alone me. I still get them as I have a child to care for and a husband with health issues, not because I am ill myself. Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won't find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap! I can't even walk to the bus stop or even to the end of the street! It's sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.
My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway. My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more. It's such a pain always being different though when all you want to do is blend in and be normal. My daughter has been picked on because I am disabled, how cruel is that?! The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can't hear her or can't cope with the noise and energy that she has. I try to make sure her life is as normal as possible, but it's always going to be a bit different. She will always stand out as I need to park in the school car park as I can't walk from the street parking an issue which continues to cause problems even though she has been there for 3 years. Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.
I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can't do anything with. I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don't put much effort into getting ready. I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box. I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can't do that alongside watching Tv or having a conversation. I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done? Nothing. I have enjoyed doing it, but its not what I wanted it to be. I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more. I really have to try and rest tomorrow as it is this months class on Friday. Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight. But I want to do things, its so frustrating.
I like cooking and baking, but can't manage the preparation or standing over anything, can't follow a recipe. Occasionally make packet mix buns with Emily, but only if she mixes it. I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it. My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can't ring up about it and Rob hasn't had time and can't get someone else to do it as they need to be able to explain the problem. Add in my food intolerances and food gets very boring. I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable. I mean what can you have that's gluten free, dairy free, sugar free, fish free and easy to prepare?! Availability is getting better, but its makes shopping and cooking quite a chore. I can't go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco's website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses. If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can't come out mid shop.
This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much. I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can't just ignore things or wait for a better time as the better time never comes.
My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.
I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.
My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone. But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.