May was the last update I did, and we are now in August. Where has the time gone? So am going to do an update on where the past few months have gone and why I have been a bit quieter on the updates front.
An update on C
It has been quite a busy time with C, she has made a slight improvement, where on good days she will come downstairs to get a drink or snack. Which has been amazing as before this she was totally bedbound, so small steps and hopefully continue to improve.
One thing, which I have spoken about previously, is the lack of medical support we have. Her Consultant never seemed interested in speaking with us and all we ever got was go to A&E where we would sit for hours and then sent home. We ended up contacting our MP, who we had a meeting with and was shocked at the way we had been treated. While we were at the meeting he sent through an email to the Chief Exec of our hospital. We did receive a response which was all lies and which I replied to point by point.
Two weeks later one evening I had a phone call from our Consultant, who admitted she had not been in contact as she did not know what else to do or how to treat ME. She has contact a hospital in London but they are not taking referrals or there is a hospital miles away she could go to as an inpatient – we are still waiting to hear about any of these. She has also contacted about physio and has agreed to the strengthening of her muscles and not the GET guidelines which we have refused to let her have. So still nowhere any closer to getting her the treatment she needs.
A first meeting
Since becoming ill C has lost all contact with her friends, apart from one. When she was about 9 she joined a drawing app and started talking to a girl of the same age. Obviously we checked she was who she said she was, as did her parents. They have spoken every single day since. Unfortunately she lives in Scotland so have never met. Until last week when she came to England to visit family. The girls arranged to meet up and my heart melted seeing C do something for a day that any normal child does all the time without thinking and be a normal child doing normal things. It wiped her out and she was bedbound after, still is knocked out by it. But it was worth it to see her so happy.
A trip away
In June my husband and I had a little trip away to South of France. We both needed a break and to recharge and although we chose the hottest time to go, it was in the 40’s it was just what we both needed.
Update on Me
Well I have certainly been having my share of NHS treatment this year. I had my first mammogram this year and was called back for further investigation. As you can imagine I had all sorts going through my head. I went along for the appointment had a more in-depth mammogram and then ultra sound. I saw the area and it was a very small lump. It was decided that they would do biopsies and place a metal marker by the area for future reference. The biopsies came back all clear thankfully.
I have hit the menopause, well a few years now but this year has been a nightmare. The hot flushes are even worse and my bleeding has caused me to get quite ill. I saw my GP crying and pleading for some help. Eventually she referred me to hospital and a gynaecology appointment. I saw this amazing Dr who listen and prescribed tablets to stop the bleeding and I was booked to have a hsyteroscopy, biopsies and a coil fitted.
This took place two weeks ago, and honestly an experience I never want to go through again. The pain was something I was not prepared for, my blood pressure dropped twice but I got through it. I am still getting cramps but feel a lot better. Just need to wait on the biopsy results, but am certain I would have heard something by now.
We have not really done much more as just not been up to it, but we did have a lovely day out with out Granddaughter a few weeks ago. She really is growing up too fast, is very cheeky and can she run fast when she has her mind-set on something.
So what have you all been up to recently?