Well since I have not dne a blog for a bit I figured I shoud get my backside ito gear and do one. I’m having a flare up at the min so please excuse spelling, wrong words, punctuation etc.
Well on the bank holiday weekend at the end of May I went to Big Church Day Out which is a weekend Christian music festival in West Sussex I the grounds of the beautiful Wiston House. I have gon the last fw years and absolutely love it. My friend comes with me as my carer and we stay at a local B+B that has a disabled access room. I know that going will make me ill for about a month afterward but I love it and weigh it up and dcide that it is worth the price I will have to pay.
I was an amazing weekend with brilliant artists such as Third day, Rend Collective, News Boys, Worship central, matt Redman and loads more. The highlight for me is always the last acts of the days whre it is a big worship time led this year by Worship Central and Matt Redman espectively. It’s an amazing time an dthey light a massive cross of fire up on the hill and they will tell the gospel in a clear way and over the weekend, undreds gave their lives to the Lord or cam back toGod fter goingaway. I cry every year, it is just wonderful to see.
There are 3 stages, the main stage, the UCB stage and the tea tent which was Tearfund this year. We wander down on the Sunday lunch time and have a cream tea and listen to the usually more chilled out tea tent stage. Then we go and have a look in the kids area where there are farm animals that you can go and stroke. I love animals so I have to go and see them! There really is something for every age group and it is such an amazing festival an di just love it!
The B+B is in a little village called Staining an dis a 5 monute drive away so is perect. They know I can’t get up for reakfast so my friend goes and has hers and orders mine and they bring it to my room for me which is really nice of them. Their full English is lovely but their eggs benedict are amazing!
The weekend before had been a busy one as it was my birthday on the Sunday. I had asked if people could come and do some gardening for me on the Saturday and for friends to pop over and have a cuppa during the day so I had a couple of blokes come and do gardening. My friend Andy came and cut back all the bramles and sorted out my logs and dis my nature wildlife log pile for me and got rid of the chopped ack bushed an dthen my friend Ransome came and did some digging for me to make the sand pit into a pond for frogs and other wildlife and made a flower bed next to it. My friend Tony came and helped me tidy up the patio area and I had friends popping in for drinks and cakes throughout the day. On the Sunday I had a BBQ with a few friends round and it was such a lovely chilled out afternoon and then went to church in the evening. My lovely friend George made me a gorgeous birthday cake tat was covered in edible butterfies. My BBQ is really cool, it has the round base which is a fire pit an dthen it has a teipod over it with the grill on a chain soyou can adjust the height and so the temperature. When I gotback from church the coals were still warm and so I took away the tripod and put on some logs and sat out in the garden drinking wine and eating toasted marshmallows and just relaxing by the fire. I really enjoyed my birthday weekend, was really nice.
The 5 days between the birthday weekend and BCDO weekend I just rested, rested and did a bit more rsting. I knew that the few weeks after would be really bad and so that is why I made the title as it is because when you have chronic illnesses like M.E you have to weigh up every little thing and decide if you are willing to pay the ptice for it. These were big things ut even things like having a shower or getting dressed or chatting on the phone have to be weighed up against how I am at the time and what the cost will be. Life is a constant juggling act when you are ill. I would recommend people watch the spoon theory at the following link to youtube. http://www.youtube.com/watch?v=jn5IBsm49Rk
The day I went away, I had a local charity come and visit me to see if they can help me with the cost of getting m dishwasher plumbed in and getting my scooter fixed. I am just waiting to hearback from them now about wether tey will do it or not. I am applying to some charities for an electric wheelchair and to one about making my garden more accessable and easier for me to garden and another about getting a new bed and mattress as mine is broken and another to see if they will help me with a fridge freezer. I am applying to the social fund for money to uy flooring so am really hoping that I will get enough otherwise it will be back to asking more charities for help. I hate asking for stuff but I am on benefits and I have no option but to ask for help. I just had to get over my pride and realise I can’t do stuff on my own. I am also waiting for an assessment about care. My new OT is really nice and he has put in for the assessment. Apparently he spoke to my oldOT and she wanted me to try and cope on my own in my new place for longer. Yes lie is easier now am in a place where I can use my wheelchair instead o crutches and falling all the time but I still need help with things like washing and drying my hair, getting dressed, going out, prepping food, housework, etc etc. Living here was never gonna help with those things so I was a little upset but my new OT has put in for the assessment anyway thank goodness. I don’t want a lot, I’m not expecting full time care or anything, I just need a bit of hel an I kow of people who have OTs who can do more than I can and have husbands and family to help whereas I am on my own and the have help so it’s not fair that I have been left to struggle on my own. When I am ahaving a flare like now it is extra difficult. If I have anaccident in bed, I strip the bed covers bu I am unable to make the bed so I have to sleep in a sleeping bag till I can get it made again. Things like getting food and drink are alsi really difficult now and getting to the toilet and brushing my teeth are difficult and things like showers go out the window.
Merlin, my cat, is rilliant though and he just knows when I am having a bad time and he is extra affectionate and will just snuggle up next to me in bed and is so sweet. Life without him would not be as good. Pets are so therapeutic and having something to love and who loves you back is wonderful. Cat are independent and so are the perat pet for someone like me. He comes and goes when he wants and I have a food dispenser with his dry food in that just tops up as he eats and he ha a water fountain that I clean out once a week and top up mid week bu holds over 2 litres and gets filtered continuously so he always as clean water.
Well I think that is eough for now so I shall go and have a nap now I think. Thx for reading 🙂