31/12/2025
Falling apart at 39!
2025- the year of transport dramas. Oh have I learnt to dislike cars, and buses and trains... not planes- still can't afford to go on one of those! I mean, every single year for the last decade has brought us new challenges, and 2025 has been no exception. I could just write a long list of all the things that have gone wrong with our cars this year but that would be a boring post. So to summarise that part- mot failures, local garage smashing big hole into the side of our car, a new (to us) second hand car having problem after problem, break downs to and from Devon causing a blockage on a major A road, mould and most recently coming out to a smashed in back window. Both mine and more so Kevin's cars have been a huge financial suck this year!!! Emmett, who wanted to be a mechanic has decided that he is liking cars a lot less than he did š¤£
So I move onto other forms of transport, but bear with me. Overall, Iām pleased to say, my munchkins and Kevin have been, on-the-whole, fairly well this year!! Following Emmett's trip to A&E with his Asthma on Christmas Eve last year, weāve had no more unplanned hospital visits for him. Ida's ear infections have lessened, although typically they cancelled her surgery in March and a week later she had another ear infection and burst ear drum. She continues to have regular ENT appointments and hearing tests but things are looking much better. Me on the other hand, I've been the one with the medical dramas this year... and feeling let down by NHS & private medics.
Back in July my health took an unexpected turn. Out of the blue my legs started getting large lumps all over them, these were eye-wateringly tender. After a few days the lumps started to look like massive bruises over the lumps. Trips to the GP and blood tests resulted in me being sent to A&E, where further scans and tests baffled doctors further. I was prescribed some strong pain relief and anti-inflammatories. It is thought that I have an Autoimmune disease, but further investigation was needed to establish what exactly was causing this. An urgent referral to Dermatology and Rheumatology. Dermatology saw me within a couple of days and said I needed an urgent biopsy, suggesting I would get this appointment and a follow up post biopsy within 10 days⦠I never did get that appointment for a biopsy or hear anything more from Dermatology. I never heard anything from Rheumatology. I never had a follow up with anyone. Thankfully, after weeks, the leg problems and dangerously āoffā bloods resolved themselves, but being no clearer on what the cause was, and whether an Autoimmune Disease is to blame, I am likely to experience further problems in the future.
Overlapping the odd leg problems above, was another life-changing medical diagnosis. Four years ago I experienced some unusual āepisodesā. It was put down to an increase in an antidepressant and so I was weaned off this and for a long time, didnāt experience any more āepisodesā. A year later, they reoccurred, and three months after that they happened again. I went to the GP again after the second experience and was referred āurgentlyā to Neurology. I had done my research and was concerned that it could be a form of Epilepsy. I received a telephone appointment just after the third occurrence and the Neurologist advised me that it sounded like the āaurasā that precede a seizure but they end before a seizure occurs. He advised me that it is NOT Epilepsy and so I specifically asked if I can continue driving and he said yes. He did refer me for a brain MRI and EEG. These happened within the following year and from my NHS app I could see that these appeared to have come back normal. I never received these results officially and had no follow up appointment come through to see a Neurologist. Nearly a year and a half after the last āepisodeā, on the day of our friend Gemmaās funeral in June, I experienced my forth set of āepisodesā. I again spoke to a GP and explained that I never did get a follow up with a Neurologist for my scan results, so the GP referred me back. It transpires the original Neurologist I had spoken to, had been a locum and had long since left. Right in the middle of all the leg problems, I saw a Neurologist. The appointment was off to a bad start when I entered and the first thing he said was āItās not your fault but I donāt have enough time for you because you have been given a follow-up appointment, yet you are a new patient to meā. No āhelloā, no āhow can I help?ā. The appointment felt rushed. It involved no hands-on assessment, no Neurological tests and was concluded with āwell you have epilepsy, no you canāt driveā. I was absolutely gutted. Not least because I suddenly had this new life-changing diagnosis, with unknown medication; but also because my entire job as a self-employed, domiciliary Physiotherapist is dependent on being able to drive! I visit patients in their own homes. I have clients in Thame, Tring, Penn, Haddenham, Saunderton⦠all over the county and beyond! How was I going to continue work, school runs, afterschool activities? I decided to get another opinion. Given the lack of assessment I was provided by the NHS, I paid for an assessment by a private Epilepsy specialist. This time I was given a full Neurological assessment and, after just 3 weeks of bus journeys, I was overjoyed to be told that although confirmed Epilepsy, it was a mild form and this Neurologist was confident that with my type of Epilepsy I am safe to return to driving. I skipped out of that appointment thinking after a quick call to the DVLA, I would be driving to my afternoon patients. How wrong I was!!! Five months on and I am STILL not driving! Nothing is quick, everything with the DVLA has to be done by snail mail and most frustrating of all; the DVLA is still awaiting the confirmation from my Private Neurologist regarding his opinion. I havenāt had any further episodes thankfully. Hereās to hoping that 2026 quickly brings me some joy on the driving front.
Just for added detail, my type of Epilepsy is known as Temporal Lobe Epilepsy ā Focal Aware Seizures. Despite my time working in Neurology, I had no awareness of this type of Epilepsy, so I will have a go at explaining my āepisodesā; they are very hard to describe! First off I get the feeling that something is up and I can now tell when these episodes are coming. Then I feel like I am getting the sensation of DĆ©jĆ vu except it is like I am remembering a dream. This dream memory is building to a very pivotal point in the dream ā I feel this sense of, almost, excitement building up and that feeling you get when youāre on a rollercoaster with the sensation moving up my body. Then just as the dream memory is reaching that pivotal point, everything just disperses. Gone. And instantly if you were to ask me what that dream was about, I could not for the life of me give you any details about it. These happen several times in one day and after each āepisodeā I am left feeling more and more sick/nauseated and with a headache. I suffer from migraines anyway but I am sure to have one afterwards. From the outside I donāt do anything odd or weird, and I certainly donāt āfitā. I have been in the company of my children, of a friend and, in the case of the June episode, I was stood and holding hands and able to tell Kevin that I was having an episode. I remained standing and aware of the funeral going on around me. They might not sound like much, but it is definitely a unique experience, that hopefully I will never have again.
Navigating work has been very challenging. I applied for Access to Work, in the hope that I would get some help to cover the cost of taxis, but at the end of the application it stated that I will not hear the results of the application for at least 30 weeks! I was paying out lots on bus tickets, not just for me but for the kids too. We were arriving late at gymnastics and Rainbows. I had to reduce my daily patient numbers and spend far too much time traveling. An example is a patient in Thame should take me 20-25 minutes by car; but it now takes two buses and lots of walking and about an hour and a half travel time each way! For patients off the bus route, I have either had to stop seeing them, or for some Kevin drives me to them. This has resulted in a significant financial hit to me and to Kevin. In October time I finally got my Disability bus pass. This has made navigating the buses a little bit easier BUT apparently working age people with disabilities don't need to use the bus before 9am š. Alike the OAP bus passes, in Buckinghamshire, you cannot use the bus pass before 9am. So, I either pay to get on an earlier bus, walk even more miles, or wait for the bus after 9am (which is always rammed! Mostly with older people). And boy are the buses unreliable! Again I could bore you to tears with all my frustrating bus stories (crazy drivers mounting every curb, having to hang out in a wacky-backy stinking bus station at 7pm with Ida whilst some fight is going on, or suspicious stains on bus seats...) but needless to say, I'm grateful I have his option but I WISH I was back driving!!!
Itās not been all doom and gloom though, there have been lots of positives! Emmett has remained well, he has been in remission for 6 years now, and has now had his oncology follow ups move from the acute service to the Outreach service. This is a big step, it means Emmett has less bloods and clinics etc which he is very chuffed about, but leaves me with more anxiety not having the frequent reassurance. Emmett is still a keen Cub and has been awarded his Bronze Scouting award and the extra special County Scouting Commendation Award. This year he was formally assessed for Dyslexia and I am pleased he is now getting additional support with the areas at school that he has been struggling with. He was proudly given the role of a Peer Mentor at school this year.
Ida loves school and love her Gymnastics even more. She has achieved her stage 5 at Gymnastics. She cannot walk anywhere now, she has to cartwheel everywhere she goes. Ida has also been doing Gymnastics at school and has been awarded Gymnast of the week several weeks in a row. Ida still loving working towards her badges at Rainbows and will move up to Brownies in a couple of months. She was nicknamed āMiss Mathematicianā at school which she proudly took. Ida has an additional support package at school, as she too is likely Dyslexic.
I am so proud of both my amazing offspring, They are the best!
Emmett's Genies has had another fantastic year, with our third Year in a Day being incredibly successful, a glamorous Ball and loads of other aspects to be proud of. The charity is like having another, full-time (yet unpaid) job and I have so much to share about the progress we have made this year that I will share these in another post.
Another accomplishment this year is that Alicia Marie Peasley and I have had an brilliant year together. We set up Aylesbury PANDAS (which is a perinatal mental health support group), almost three years ago. The group has been consistent in attendance since we began but this year has been the best yet. We have some incredible women attend, one described us as their āpandas familyā and we get such wonderful feedback. But additionally, after contacting our local MP, Laura, at the start of the year, we have had her support too. Laura has provided us with some amazing opportunities; I was mentioned by name in the House of Commons; earlier this year I was invited to Parliament where I was able to chat to many MPs from the House of Commons and a couple from the House of Lords, about our support group, what areas of maternal mental health support we felt needed more attention or is lacking, what government can do to improve maternal mental health support etc. I was able to discuss my experience and also the experiences we have come across from the women that attend our group. Our input helped shape Lauraās new Bill that she presented to parliament known as āSophieās Lawā.
https://maternalmentalhealthalliance.org/news/sophies-law-laura-kyrke-smith-mpperinatal-mental-health-support/
Other note worthy highlights this year include my little brother getting engaged to the lovely Becky; our family trip to Bath and our family holiday to Devon, plus a trip with my parents to York. I got to see the fantastic Usher in concert, someone I have wanted to see since my teen years. I also loved taking the kids to Lapland UK, it was a magical experience. And, given that my lack of car means I am walking between 5 and 7 miles a day, I not only have achy knees these days, but I have taken on a new virtual challenge ā Route 66⦠just 2,149 miles to go during 2026!!!
2026 will see Ida turn 7, Emmett turn 11 and also Emmett heading into his final year at Primary School, Me & Kevin celebrating 20 years together and me turning 40!!!! Letās hope it is a better year for us and for all of you too ###