I can’t believe it’s Christmas this week, where does the time go?
We are making plans to be with family over Christmas, last year’s plans were scuppered when most of Rob’s side of the family got Covid and we had to quickly change plans and ended up being just with my Mum. It was more peaceful, but weird not seeing everyone.
Despite trying to get back to normal life Covid still seems to hang over us, doesn’t it? Emily caught it in March and then had a bad reaction to her second vaccination. Rob was ill when we were on holiday in Austria, it presented like his pituitary issues, but with hindsight was probably Covid, I got Covid as soon as we got home. Ironically my brother also caught Covid whilst in Austria! My Mum got it when she was on holiday in Tenby and had to get a taxi home, she is being messed about by her holiday insurance who are refusing to pay out even though it was her holiday company that told her she had to go home and not complete the trip. She has been left with a £500 taxi bill and won’t be using that holiday insurance again.
Rob now works from home all the time; he is supposed to go into work occasionally but rarely does. They haven’t even had a Christmas do, everything has changed so much. It is helpful to have him around and we have managed to create him a more permanent work area. The focus at work recently has been planning for the nursing and ambulance strikes. They will cause a lot of problems for an already difficult situation in the NHS. It is quite scary, we all have to hope we don’t get ill. With strikes in so many sectors’ things still feel so uncertain and fragile. It will be a difficult Christmas for many. We have some interesting discussions at times about things he is working on, the ones we are allowed to know about, and sometimes my ideas might get used, I am still awaiting my consultancy fee! At parents evening Emily’s English teacher said Emily comes up with some bizarre things during class discussions, I think that is probably a reflection of some of the conversations we have at home!
We are lucky to be able to celebrate Christmas and be able to to buy food and presents, but do feel rather guilty about it. Price increases have been crazy and last weeks cold spell was expensive. Today it is expected to get to 8c, very warm for December, but at least we won’t spend as much in heating costs. We definitely won’t be getting a white Christmas this year, it looks like Christmas day will be very wet. I think we have just about finished shopping and wrapping, it is exhausting even though i started it in September.
Emily took her first GCSE this year and got a good pass. She had mock exams before the Christmas break and has been working hard, but is finding the exams difficult. The school was very cold and she had a cold, so is quite anxious about results. We have also been doing college visits for her to go on to do A levels, her school has a 6th form, but she wants to go to college. It’s been a difficult year for her at school and she can’t wait to leave, she is counting the months. To be honest so am I, it’s hard seeing her so unhappy. Her teachers are confident she will do well in her exams, but Emily doesn’t have their confidence, I am sure she will do better than she imagines, but she does need to put the work in. She hopes to study Maths, Biology and Psychology at A level and has already been offered places at two colleges, subject to exam results.
I can’t believe that in just over 6 weeks Emily will be 16, she is getting very grown up and independent and I miss my baby. It is good for her to be able to do her own thing though and not need us for everything. At the moment she needs us a bit more as she has a lot of extra classes at school for exam prep so we have to go and collect her, there is a bus she can catch, but then she has quite a walk to get home and the weather has been awful.
As I mentioned we had a holiday in Austria in August, due to Rob being unwell we were very limited in what we could do and spent a lot of time in our room, but at least we had a good view and it was warm. In October we went to Devon to a craft and sports hotel, we took part in many crafts and learned some new skills, Emily and Rob enjoyed some of the sports activities too, including an ice skating rink that is not ice! Talking of ice skating we have booked to go the temporary ice rink in Leeds city centre this week, you can go on in a wheelchair so I don’t have to miss out. Only problem is that yesterday they had to close the rink as it was melting, so keeping fingers crossed it doesn’t get cancelled. We haven’t done much in the run up to Christmas, so it will be nice to do something different.
Our crazy cat is now 3 and has only had one emergency dash to the vets this year! She keeps us on hour toes and we never know what she will get up to next. She didn’t like the freezing weather last week and didn’t want to go out, I ended up getting up in the middle of the night to go out to the garage to fetch her litter tray inside! We only normally have it inside if we are going to be away as she doesn’t like using it. She is currently fast asleep in the chair after getting me up at 6am, she needs a school holiday setting! Yesterday morning I shut her out of my room about 5am and ended up not getting up till nearly 8.30 (late for me), but apparently Oreo spent most of the time outside my door crying, I can’t hear her 🙁 We have had the delights of her bringing in mice and birds, not nice to wake up to. The colder weather put a stop to her hunting, I hope that she doesn’t resume as the warmer weather brings them out in search of food.
In April I got the dreaded letter to tell me my PIP renewal was due, this was a shock as last year they told me that my award had been extended to 2023. We rang to ask them why it had been sent and they said that they had taken the extension off and out it back to original date as they were now back to doing assessments. As usual the deadline was very short and I also had to submit early due to the deadline being during the early may bank holidays. Last week the DWP messaged me to say they still have my claim, but have not looked at it yet!! The only positive is that the longer they keep it the longer I continue to get paid. Once they do look at the claim there is the risk that they will turn me down so it’s always a worry. It is so hard having to send details of your condition and how it affects you and then to be told they don’t believe you is cruel. With budgets getting ever tighter and the system being under more pressure than ever with increasing numbers of people of working age being unable to work due to poor health, there are no guarantees. It constantly feel like awaiting execution!
As usual for me this time of year is difficult, another year gone and feeling I haven’t made any progress and feeling I need to do more, even though what I do is too much. It never gets any easier and feels worse with each passing year. It is so long since I had a normal life and I feel life is just passing me by in a fug of pain and fatigue. I think with Emily nearing the end of school and thinking about a career it brings it home even more how much I can’t do and it feels like a bad example to Emily. I am always trying to work out what I can do to feel more normal and how I can feel like I make a contribution. Whatever I try or think about always seems doomed to failure and a further reminder of how much impact my illness has on my life and that of those around me. I am not bedbound or terminally ill so have to be grateful for what I can do, but it is not what I want from life. I hate looking lazy and having to make excuses for things I can’t do and having to ask for help or just missing out. I push myself to do, what I feel is very little and then have to suffer the consequences. Just for once I would like to be able to do something and make a contribution without failing or feeling so ill as a result.
I continue to try and make cards and other little craft items, but even that is so hard at times and I make a lot of mistakes and get so stressed with them. There is no outlet for what I make and this makes the struggle to make them feel worse. I keep thinking I will give up as all I do is spend money on materials and then give away what I make or keep it hidden away. I think cards are becoming obsolete, people don’t communicate in that way any more and with the increased postage costs and mail strikes it is not looking good. I have taken part in several online markets for charity and not sold a thing, especially hard when you see other people saying they are doing really well. I don’t know where I go wrong and what makes one person’s items more desirable than another. Aside from card making I have so many unfinished projects as I struggle with them and never seem to finish. The quilt class I attended once a month has now ended as there is no one to teach it, so that is yet another half done project. I have been trying to complete some knitting and cross stitch, but end up undoing most of what I do, it is soul destroying, but I have to keep trying. Yet again I am questioning whether having a website is viable, I haven’t sold a single item through my website and rarely write blog posts, people have better things to do than read about my mundane life. I do wonder how some people get thousands of followers from posting about every day life, luck I guess. The ones I seem to follow are about animals. Our cat has a Facebook page, but doesn’t post much, she is usually asleep!
Earlier in the year I began making stuff for a Hedgehog rescue for them to raise much needed funds. Fundraising is very difficult right now and not much of my stuff sold. I have spent hours looking at hedgehog themed things and have lots of ideas, but the main thing that sells is little knitted hedgehogs, which a lot of other people make. At one fundraising event they managed to raise over £800, but others have raised very little. Ever increasing prices mean the costs of the rescue go up all the time and they have had problems with power cuts, water supply and having people to help out, it’s been a rough few months. Penny the owner of the rescue, puts in a lot of time and effort, but can’t keep going without funding, she has appeared in the news a few times https://www.yorkshireeveningpost.co.uk/news/people/meet-the-leeds-hedgehog-rescuer-saving-hundreds-of-animals-from-injury-3482116 and https://www.itv.com/news/calendar/2022-07-01/hedgehog-has-leg-amputated-after-being-clamped-to-road-bollard , they have Facebook page to share pictures and information about the rescue and a sales page for fundraising, also an easy fundraising page and an Amazon wishlist. Having to fundraise takes up time too and is very difficult as the rescue is usually full. At one of the fundraising events Rob got roped in to being Santa. I don’t usually go as it’s so difficult from a hearing and ME point of view.
My wireless mouse has just died and I find it difficult to use the one on my laptop so I had better take that as a hint and stop typing. I was going to add some pictures of things I have made. but I can’t manage it without my mouse and I have messed up my settings too!! Oooooo I got it back, one final try with some pictures;
Wishing everyone a Merry Christmas and A Happy and Healthy 2023.