Hi there again, I hope you are well,
Are you sat down? Got a drink and maybe a snack? Yes? Okay, let’s talk about what has been happening and how things have been for me since my last installment of A Day living with FND.
I have been a little quiet on my social media over the last few days. Now, there has been a few reasons for this. Firstly, I have been trying to spend a little more time with Rachel before she heads back to work, which is now less than a week away. The other reason is thinking about her going back to work really makes me think how I am going to cope when she does go back.
Now someone who is very close to me has said “it is okay not to be okay”, and that itself brings a tear to my eye. It makes me question the saying and sometimes myself, is it okay not to be okay? I really try to look on the positive side of everything all the time, but this is at the moment is very hard. Soo much has changed since May, I’m so dependent on those around me, more than anyone really realises. It makes me feel rubbish, down in the dumps if you like. How would it make you feel knowing you can’t get in the shower by yourself? And the fact that you can’t even wash yourself when you’re in there? Now this is just one problem, making a brew, food or even nipping out to the shop. While I write about this even now it makes me feel soo down.
Reading back over the above makes me think, wow that’s very negative. That is the case and it down want you as my readers to think that I’m not okay, because I am. I take each day as it comes and try and think about the positives it is just now and again that I feel crap.
Just to tag onto that, as I am writing this, my phone has just gone off and it is was my friend Dean, dropping a tweet asking how we are, with the hashtag #fndfamily. D, nail on the head, we as people who have been diagnosed with FND are a small family. This has really but a smile on my face. Thank you!!
I have a few appointments this week, I have my speech therapist coming to see me at home! This itself is good as I don’t have to try and find someone to take me to Lancaster and take more of their time up, the other big appointment is I have my face to face PIP assessment. Talk about anxiety levels being through the roof, I will give a short update about this later on in the week.
The other big news that has happened is all about a letter that landed late on last week. It is my letter to see Professor Edwards in London (well, at least one of his team). It isn’t until December, but will be here soon enough. It is over a 500 mile round trip but I am sure it will be worth it, I have heard nothing but good things about Professor Edwards and his team. Hoping he can shed some light or even point me in the right direction in getting some help!
No physio this week, which is sad, but I have been told a thing or two to do, and someone is coming on Friday to raise up my sofas to help me getting in and out of them. Writing just that little bit makes me think of S and H, I miss them. They helped me with so much, but I suppose they are off helping other folk that need it more than me!
Well that is enough rambling from me for a while, thanks for reading.
Look me up on Twitter @MatthewNewsham1 don’t be a stranger!