CFS diagnosis and the ride beyond.

Its been a while…nearly five months to be exact. The last time I posted I was in a bad place and struggling. I’m not going to lie, I still am, but I’m dealing slowly. I haven’t blogged because a lot of what I talk about is either mental health issues or my daughters illness. And to be quite frank and honest, that’s the two things that have been tearing me apart from the inside. So where exactly do I begin..?

We were waiting for R’s appointment with the CFS specialist. I knew that she was going to be officially diagnosed with CFS, call it mothers instinct. As a Mum you just know, you know when something is off, something isn’t right. You get that feeling deep down in your gut that feels like your insides are bleeding. There is nothing you can do for your child other than take care of them the best you can, and wait. On the day of our appointment I remember watching the sun come up. I didn’t sleep a minute and I was so nervous. The anxiety inside me was awful and then leaving the house made it all seem so scary. I’m not going to go over every last detail because theres so much ground to cover. To cut a long story short, R was diagnosed with CFS just as I knew all along. Some people say its just a label, but to be entirely honest with you, if anything for me, that label cuts out all the other fatal things that I had imagined was wrong with her. At least with CFS there is hope for full recovery and the outlook for her future can be brighter.

In the weeks that followed on from that diagnosis, R was given an Occupational Therapist and a CFS Psychologist. A pacing rehab programme began for us and the schedule is striiiict! The beginning was supposed to be the hardest and it was, but what was harder was that her high activity hours were overenthusiastic. She went from 4 hours of high activity a day, to 2 hours of high activity a day. This was over the first 6-8 weeks of schedule. Now we’re up back up to 3 hours of high activity and today was the first day. Now before we get any further, let me give you some examples of what counts as high activity and low activity.

High Activity.

  • Watching a film/Tv that she hasn’t seen before.
  • School.
  • Outings.
  • Anything physical.
  • Video games.
  • Talking to friends on the phone (facetime or txting.)
  • Seeing friends.
  • Drawing.
  • Reading a book.
  • Appointments.

Low Activity. (What she can do when high activity is used up.)

  • Colouring in already drawn images.
  • Reading a magazine.
  • Listening to music.
  • Watch films/Tv that she’s already seen.
  • Having a book read to her.
  • Chopping or preparing food.

Anything like showering, getting dressed, brushing her teeth, all counts as high activity. No naps are allowed during the day. And her bedtime is strictly the same every night as well as waking up in the morning. She’s 10 years old and has an alarm clock already to wake her on time everyday. Each fortnight that she goes without a “crash” her high activity is increased by 30 minutes. Her schooling has been limited to just 1 hour a day and that won’t be increasing until her OT feels that her body and mind is capable of coping with more hours.

So as you can probably decipher, life is extremely tough at the moment for us, but for R its worse. Its been mentally damaging for her and her anxiety has been flaring. She is terrified of crashing and having to start from the very beginning again. Anything can trigger a crash for her, even just a common cold or gluten attack. She has her good days and bad days, as many people with chronic illnesses do but she knows her Mum is here and fighting with her. Sometimes that isn’t enough though, and R has really been struggling with feeling isolated and missing out on friendships etc. Which is why we now see a psychologist to help her process her thoughts and feelings. Its still early days with him and I’m not sure if I will divulge much information on this as I don’t think its my right to. I will let you know on her progression though.

You have reached the end of my brief update and I shall try to stay on top of more frequent blogs. Thank you to the few people that have reached out to me via snapchat, twitter and instagram. It means a lot that people are genuinely sending good wishes our way and taking the time out to message me or enquire about how R is doing. Thank you!

Kimmi’s Qualms. Xx

2 thoughts on “CFS diagnosis and the ride beyond.

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