I had to be rescued by RAC yesterday. The driver seatbelt has been jamming for a while. Rob rang dealer who said they couldn't look at it until end of May and to ring RAC if stuck. Yesterday it got stuck in school car park so I was unable to drive. A lovely RAC man came to my rescue and got us home and has taken car. No idea when it will be fixed. VW can't get us a courtesy car, but RAC got us one last night. It was difficult to organise the help as I can't use phone, so messaging back and forward to Rob who was at work. Then the RAC man got the belt moving and wanted me to drive 10 miles to dealer! My limit is much less than that and when I know where I am going and without a panicking child in the car too. So then I had to ring Rob who arranged that could just drive home and then the car would be towed. It was then manic when Rob got in trying to sort out the courtesy car, but the RAC were very efficient. I was left with a car I haven't driven before and that is bigger than I am used to, whilst feeling awful to get Emily to school this morning. To be fair I was offered help, but wanted to keep as normal as possible for Emily.
As soon as I got back from taking her to school my phone started ringing about the car, but I couldn't speak to them so asked them to ring my husband if they needed to speak to us. I was also sent a video message of my car on a ramp saying we have checked you vehicle. When Rob spoke to them they said they hadn't looked at it and didn't know when they would. It all got too much for me. I get so overwhelmed and having to deal with unexpected things really knocks me out. I have been trying to rest all day, but so unsettled. Only consolation is that Emily has gone out with a friend straight from school, so I can sit quiet for a bit longer.
Emily is very unsettled about residential next week and bedtimes are hard work. Her hamster is very sick too, it's not eaten or drunk for 2 weeks and has gone blind, the timing is not good. The hamster was her birthday present and is only around 6 months old. I feel really sorry for her everything she has contact with seems to be sick or old. She gets very upset about my Dad's condition and we have a cat who is 17 and going strong, but we are always asking her to leave him alone. On top of having a Mum with ME and a Dad who is on life saving medication following cancer, its not surprising that she also gets overwhelmed. She said to me last night that I was special because I was different, but it is unusual for her to think like that. In some ways I think her understanding is getting a bit better and she will try to be helpful, but she also gets really frustrated and wants me to do things that I can't. It must be hard seeing me struggle to deal with seemingly trivial issues and she offered to speak on the phone when we were trying to sort the car as she knows I can't, but she was also panicking as she knew we were in a difficult situation. It didn't bother me too much as I knew we were safe and not stranded on a road or anything, but the stress of managing the situation was hard. I did have to laugh though when Emily asked me if it was the RAF we were waiting for!
I had some blood tests and an ECG a couple of weeks ago and I get results next week. I don't know what results are but they rang me to say I needed a double appointment and then gave me an appointment 3 weeks later. I have to go next Friday straight from collecting Emily after the trip so the timing is not good, but at least Rob will be there with Emily. I have no idea what it is they want to see me about, but assume it is not urgent. The tests were to investigate my dizziness and palpitations which have got worse. They could be worse as I increased my Amitriptyline at the end of last year to help with pain and sleep. When I went for my medication review in March I was asked to stop my anti inflammatory painkillers as I have stomach problems. The daily indegestion has now stopped, I was getting it despite taking a high dose of Omeprazole. Stopping the anti inflammatories meant I was left with little for pain control only Paracetamol and Cocodamol. Cocodamol also makes me dizzy, constipated and headachy, so left with trying to take as little as possible and try other ways to manage the pain. In the last few weeks my pain has not been unbearable, but I think that is because of the adrenaline that is making me so restless.
I was told about a device called Alpha Stim that has helped a friend with her ME, anxiety, depression and pain. I was very sceptical and the device is very expensive, but a drug free treatment was tempting. Rob did some research and spoke to the friend and decided we should get one as there is a 60 day trial period. Using it seems to be making me feel more sick and dizzy, but it's difficult to tell as I am stressed with other issues. I am trying to get some advice from the company who are quite helpful. I also think though the stress of wanting it to work and worrying about the cost of it is having an effect. The friend says she feels calm when using hers, but I don't find it relaxing, except that I use it when lying down. I wasn't hoping for miracles, but didn't expect to feel worse and hoped that it might just take the edge off some symptoms. I was wary about trying, but I take medication and don't worry about that. And thinking about he cost too, I spend £104 a year on a prepayment certificate for my medication, then £32 a month on Physio to help with pain. I also have a wheelchair, a mobility scooter and hearing aids so the costs mount up so the device seemed a bit less extreme.. I really don't know if I should keep trying in the hope things will settle down a bit or whether I am making things worse. and I need to make the decision before the 60 day deadline, which is still a while off, but I feel under pressure, which of course doesn't help.
In my calmer moments I have been trying to get into things for ME awareness, see my post http://poohbear71.blogspot.co.uk/2016/05/undies-on-outside.html. I have also made a few ME themed things
I am trying to make a few in return for donations to ME charities, it gives me something to focus on and enjoy, but can also become stressful as I don't like to let people down or keep them waiting and I can only do them when I am on my own and not having to deal with other things.
Against my better judgement I also signed up for a Play Therapy course. It is all online and course work isn't compulsory, but of course I want to do it. I decided to do it as it is something I had an interest in before I was ill and also thought it might be helpful with some of Emily's issues. So far I have read first module and answered some multi choice questions, but I had to keep going back through text to find answers as I can't remember what I have read. Then there some questions to answer in your own words, I gave up at that point, that will take a lot more effort. There are 9 modules. In just over a month I have done a tiny bit of it. I am so upset and frustrated as it feels I can't stick at or manage anything. The temptation is to keep trying things in the hope that I will find something I can do or something that helps my condition, but I always end up feeling worse and being unable to cope with my daily routine.
When I do manage to do something it seems to take all my energy and I struggle with things that should be so simple or get myself in such a mess trying to work something out and it ends up taking me hours to do five minute tasks.
I really need to take note of this sent to me by my Uncle this week.
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