Oh my goodness, what a bloody week I have had. I honestly believe that even a ‘well’ person would have struggled to get through this week!

I had to change my work days around as both myself and my son had different hospital appointments. So I worked Tuesday, Thursday and Friday morning. Unfortunately, my days off were all extremely busy running to different hospitals. 

My youngest son, has been experiencing a buzzing noise in his ears for the past six months and this week he had two hearing tests and then later met with an ear, nose and throat consultant. I was very surprised to discover that he unfortunately has quite severe hearing loss in his right ear and significant loss in his left ear. Initially, I started to beat myself up about not picking up on this. Honestly, I had no idea his hearing wasn’t good. His speech is perfect and his development normal. The doctors believe that he has a blockage between his nose and middle ear. They have given us a steroid spray and then he has to be retested in 3 months. Unfortunately, if his hearing doesn’t improve he will need to be fitted with a hearing aid 😕 I know that our little family is so strong and we will get through this together. We’re staying positive and hope that the spray will do the job! 👍

Yesterday afternoon (Friday), I met with one of my neurologists. It was a really positive consultation 😊 They’ve started a FND clinic at my hospital which I am being referred to! That’s fantastic news and I can’t wait to attend! Also, my pain has been getting gradually worse and worse. It keeps me awake all night. Normally when this happens they tend to change my medication which often results in me becoming more poorly. Thankfully, they decided to up my current meds and believe it or not, last night was the first full nights sleep I have had in a month. However, it’s early days and upping my meds will inevitably have side effects. I did struggle to wake up this morning and feel quite spaced out today. I won’t give up and I’m feeling positive that things are going to get better. 

Next week I have my PIP assessment (Personal Independent Payment). This is a replacement of Disability Living Allowance. I don’t expect a lot of help but we are struggling financially because of my illness as I can only just about manage to work 2 and a half days a week. If they allow me to have a small bit of help to cover the cost of things to help me when cooking and bathing it would be fantastic. At the end of the day, I know that having FND has been very destructive to our lives and if they don’t care that’s their choice. 

On the 23rd May, I’m meeting with an occupational therapist at my local neurological hospital in Watford for a fatigue management course. I’m hoping that she can help me with managing my fatigue better! She’s going to meet with my neuro physiotherapist and together they’re going to put together a management plan for me.

There’s so much coming up but I’m going to pace myself! On the positive side, all of these things are in place to help me and my family cope with everything with some support. Rather than trying to deal with everything on our own.

When everything seems likes it’s toppling down on top of you. When you feel like you’re drowning. Stop. Please stop. Then breathe. Close your eyes and focus on the now. Don’t worry about all the things that need to be done and all of the work you have ahead of you. Just take each little step, one at a time and smile. You can and you will get through this ❤💪💪 

Thank you for taking the time to read my story. 

Charlotte xxx 

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