I thought it was about time that I update my blog and seeing as it is M.E and Fibromyalgia awareness day today, it seemed like a good day to do it. I’ trying to type this with a very beautiful but rather annoying kitty who desperately wants my attention so could be spelling mistakes a si can’t quite see the keyboard bit lol!
Well I feel like I have been on a bit of an emotional rollercoaster hence the title. I should have been down in Devon for a week to visit my parents and see my friends but had to postpone the trip so I was really disappointed. It was partly because I am just not really up to it and because my Dad would have been having his operation the day I was due and so my being there was not an option. I have been worrying about my parents as Dad will be recovering for quite a while and Mum is disabled/ill too so it’s gonna be hard for them an di just wish that I was well so that I could go and help. I’ve just felt so useless and frustrated about it and wish I could do something.
The other thing that has made me a bit down has been finding out that the council have decided that I don’t qualiy for the grant after all so I wont be getting the money for my flooring. I was relying on it and it has taken them 10 weeks to let me know I wont be getting anything which is a bloomin joke and I am not happy at all as I was led to believe I definitely qualified for it.
Been quite poorly too lately after pushing myself with the move and everything and so has been really hard physically with getting food and getting to the loo and stuff and I have really struggled. I had to go and see th eye specialist on Friday and I couldn’t drive as they were giving me special drops that dilate your pupils and so readibus took me but it meant I was stuck there for a couple of hours after. I felt so ill that I lay down on the floor in the carpark as I just wasn’t up to sitting up for that amount of time. A doctor spotted me after a while and came and took me inside so I could lie down on one of the beds. I was rally embarrassed and hate making a fuss but they were really kind to me. I’m still not over that so am in bed resting when really I want to be in the garden. Been really hungry as well but not up to cooking and have gone hungry a couple of days as I wasn’t up to getting to the kitchen. Not been drinking enough either for the same reason. I did meet my new OT though, I’ve been moved to the long term support team now. He seemed really nice and he is gonna get a social worker or someone to come and do an assessment and see about getting me some care which will be amazing and what I need but I know how hard it is so am tryig not to get my hopes up in case they say there just isn’t the funding.
I haven’t made it to church now for 10 weeks and I miss it and everybody loads. I really feel it when I don’t go and I get uite upset at missing it. I listen to UCB UK radio though an dthat really helps with having the brilliant music, word for today, teaching, etc. I alsi have the internet, obviously, so that helps me feel less isolated but I do get very lonely. Merlin has known I have been bad and he stays in with me on bad days and snuggles up on the bed with me and hardly leaves my side which is relly sweet of him. Merlin is my cat for those who don’t know. he is 2 years old an dis a British Shorthair cross. He’s crazy and affectionate and just lovely and I would be lost without him. It’s amazing how animals just have extra senses an dthey pick up on you not being well.
It’s my birthday on Sunday and so I have asked friends if they can give me an hour of their time as my present and come and do some gardening on the Saturday nd I will put on a buffet. I’m hhaving a couple of friends over on the Sunday for a BBQ as well. My new BBQ which I got from my parents for my birthday is amazing an di can’t wait to use it. You tke away the cooking bit after and the bottom can then be used as a log burner. I collected some wood from someone on freegle so I have enough wood to last the whole summer an dsomeone gave me some pots and plants so my patio should look nice and the garden will have been tidied up which will really cheer me up because it’s been frustrating wanting to do the garden but not able to. I will have the frog pond done as well. My friend is giving me her kids old sand pit so I will be getting my friends to dig a hole for it and I will make it all nice for the wildlife.
I am off to Big Church Day Out the weekend after next so I am so excite about that. For those of you who don’t know, it is a weekend Christian music festival in east sussex. My friend comes with me as my carer and we stay in a lovely B+B nearby and I love it. I pay badly for it afterwards but it is my holiday every summer and worth the suffering. It is a brilliant festival with something for all ages. There is a kids area with rides and animals an stuff. There are 3 stages, the main one, the ucb one with newer less known artists and some unsigned stuff and then the tea tent which has more traditional music an dis quite a chilled relaxing atmosphere where you can grab a cream tea and relax away from the pumped up main stage area. My friend will be away next year and I wont be able to come as my cousin is getting married so will have to save up for that so I will really enjoy myself this year.
I’ve been strggling financially and got all confused with my bills and direct debits and stuff. Part of the illness is what they call brain fog and it causes memory issues, cognitive problems an di find that I just can’t cope with bills and whan stuff comes out and how much I have to spend an di have gotten all confused and missed a couple of bills and got bank charge. CAP (Christians Against Poverty) are gonna come and help me out and get me back on track though an I am hoping that my carer will be able to help if I get one that is. It’s really embarassig trying to explain to companies that you get confused and it is even harder when ou struggle to get the right words and stuff.
I had to order new clothes from the catalogue as well ecause I can’t fit into my summer clothes anymore. I didn’t have the money to buy outright so I am so grateful to have a couple of catalogues that you pay a bit off each month. You get the interest but without it I would have nothing I could wear over the summer so needed to get clothes. I don’t go out much so didn’t need a lot but I now have 4 outfits so that will get me through. It’s upsetting that I am 5 stone heavier than when I got ill and I know most of it is medication side effects and it is hard to lose when you can’t exercise but it really does upset me so much. If I could change one thing it would be to lose the weight. Maybe that makes me vain but I just feel like these illnesses have stolen my life and now I don’t even look like me anymore. I hate looking n the mirror now and hate photos being taken. I am up to a size 18 top and a 20 bottoms and it makes me cry a lot. There have been times when I have felt desperate and thought about stopping my anti sickness meds so that I feel too sick to keep anything down but I know that is not sensible. I’ve been doig the 5:2 diet but had stopped it whn I moved as was too difficult with everything going on and now I am trying to eat all the cereal ad stuf that I have in and save money for big church day out to spend so I have been eating cereal and toast a lot and so weight has been piling on again. It’s annoying because I don’t sit around eating cakes and chocolate an dyet the weight just keeps coming. When I get back I am starting it agin though and just praying that it works.
Well I am too tired to think anymore and os I will leave it there for now. Gong to put some relaxing worship music on and just relax for a while and soak in God’s presence. God bless you all ad I hope you are enjoying the spring.