Not every day is a good day but let’s end on a positive

I haven’t written a blog post for two weeks now as I have been very busy with some sight seeing in the local area and last week my brother and his wife were here on a holiday from Denmark. This morning I have been thinking about my blog, I try where possible to always come across in a positive manner and anyone that knows me well can vouch for that. I love living here on Hayling Island, being close to my family is very special to me however there are draw backs, my hubby’s mother took ill a couple of weeks ago and although yesterday we were able to travel up to Bucks and see her with SMD it never seems quite enough. By the time I had attended a meeting in the morning, then lunch we went to Bucks to see MIL (mother in law) we then took SMD home to Kingston, dropped her off and came straight back home, I was knackered. Finally into bed at 12.45am. Unfortunately sometimes I end up being tired and emotional, add the slightest problem into the mix and of course my mate MS/Anxiety/Menopause and I become a blubbering wreck. I just wish that everyone involved in my care understood that.

Thankfully both hubby and SMD stand firmly by my side, after all we are known as The Dean Team.

 https://drive.google.com/uc?export=view&id=12BpN5R3nlBn-7bXRGbWEvzcVy18m8_Lm

I have not managed to settle into a similar social group to the one I used to attend at Chilterns MS Centre where self help was the key. Using the experience I gained at the CMSC and my knowledge of social media I reached out to the MS community on Hayling and set up a Facebook group called Hayling Island MSers. To my shock the group grew initially from myself and my two sisters to a total of 15 members who all live on Hayling. Yesterday at 11am we had our first ever meeting, Shaun is the Manager of the care home that both my sister and Tracey are residents at and he offered to host the meetings. My other sister who runs around making sure all the family are ok was kind enough to make cakes. Without me planning we had our very own Annie three beautiful cakes were there for us to delve into one to suit all taste buds even a gluten free coffee cake. I failed as I have no pictures of the delicious cakes, we were all too busy eating them.

It was so lovely to be in the company of fellow MSers and I think everybody felt the same. We have chosen to meet every month and hopefully I will be having a conversation with an MS Nurse and she also will be able to attend the group. I am quite excited by everything as I feel we have the start of something good.

 https://drive.google.com/uc?export=view&id=1cr-dscC6Iwa14JMx5MB4VMweQ8thZaoN

You never know maybe one day some people will come down from the CMSC and we can have a joint meeting.

Comments

Post a Comment

Popular posts from this blog

I am back!

Image
  Well look at me, I could not believe my luck when Hampshire County Council told me that they would be providing me with Assisted Technology to help me to be more independent. All has been made possible by using my iPad a stand and a small infra red sensor mounted on my iPad. So now I can start, it will be interesting to see how long it takes and if it has any effect on my fatigue. Basically I am using the Artificial Intelligence to assist me write the words I choose. It certainly provides great entertainment for anyone watching as the faces I pull are rather comical 😂. First I had to pluck up the courage to start using the technology and completely responsible for everything I produce. Has anyone noticed? You see what I mean!  If you look closely you will notice that there is a small silver circle sticker in the middle of my glasses. This reflects against the optical switch which sits on my iPad.  Hey presto I now have everything I need to write my blog oh and of cours...
Read more

Testing time for my MS (part one)

Image
  I have come to the conclusion that it’s a good thing that I can’t see into the future. This blog will cover the first six months of my rollercoaster of a year, because it covers a large of time I will write it over a few weeks. Christmas 2024 is when it all started, I didn’t feel quite right and I saw the doctor who was rather unsure of what it was. So home we went, but lo and behold I ended up in the early hours of the morning phoning 999. Safety in A&E the doctor started by doing a blood test. The test came back showing that my infection markers were 400 (they should be between 4 and 10). I required further blood tests but typically they struggled to find my vein knowing I needed a cannula the decision was to guide me cannula in by ultrasound. The doctor came to the conclusion  that the infection was either inside or outside my brain . It was probably a good thing I was completely oblivious to my surroundings. While the doctor tried to ascertain what was causing i...
Read more

Challenging times ahead (Part Two)

Image
  Now out of hospital, I could settle down and get back to my normal routine - wrong! My usual run of appointments started, first being my visit to the respiratory physiotherapist. My neurophysiotherapist thought that a cough assist would help, I had tried using one last year when I was in hospital with pneumonia and my ability to have a good cough and got worse. At the appointment he decided to provide me with my own portable cough assist.                                  A really good compact size  It’s also very easy to operate although for me I require hubby to set it up for me. The machine requires a mains connection and all I need to do is take a deep breath and then cough. The cough assist will give the reading of my peak flow. 3 seconds later it’s all over and all I need to do is continue by doing it twice a day, another thing to add to my routine. No sooner had I come out of hospital ...
Read more