The “Top end of Severe”

The top end of severe. That’s what I was told yesterday by my rheumatologist. My fibro is now at the top end of severe and there’s nothing more that they can do.

“Have you tried pacing?”, she asked.

Yes. As best as I can with being a mum to a daughter who is also being investigated for fibro.

“Are you aware of mindfulness?”

Yes, I practice it every day or I’d be dead by now!

No more suggestions.

“Go back to your GP and wean off your medication. That’s not for me to do” she finally says.

I’m now left hanging for another year until I see her again.

My father was with me as I was having a really bad day with a massive migraine/fibro headache thing going on and I am so weak that my muscles are just not listening to me at the moment.

I wasn’t able to shower that morning. I didn’t do any more than brush my hair. No makeup. What’s the point anyway in covering up how ill you look when seeing a doctor!!

I can barely walk from muscle weakness and vertigo from the migraine so I had to be wheeled in in my wheelchair.

I must have looked a mess and it makes a change as often this disease (yes it feels more like a disease to me at the moment than a condition!) is often invisible. Only a privileged few get to see my worst days when I hide away from the world.

That seems like most days now.

I should feel really shit right now after being told that I’m at the top end of severe. But actually, now the migraine is subsiding, I don’t. I wasn’t really told anything more than I’ve known for a few years anyway. It’s just that in the past I’ve cancelled appointments with my doctors because I’ve been ‘too ill to get to them’! Now there’s irony for you!

I pretty much told the doctor what I was going to do and she’s left me to it. I’m going to come off the citalopram as it isn’t doing any more than giving me nasty side effects at such a high dose. I’m also going to reduce my gabapentin (very slowly) down to a more manageable dose. I currently take 3600mg per day, which is the maximum allowed for fibro. It does help but I’ve now got to the stage where I’ve got no more room to increase the dose for a flare.

Flare! Huh!

In truth I’ve been in a flare for approaching 10 years, since being pregnant. Nothing calms it down. Ever.

I’m really not sure how I keep going. I think it’s because I am surrounded by my wonderful family. Hubs and Meg really are my rocks. They always see the funny side of my actions. They are so helpful and understanding. They love me unconditionally.

My parents and brothers are also fantastic. Thankfully they live only 10 minutes away so we are always there for each other.

My Dad takes me to most of my medical appointments now that he is retired. And I have a LOT of them. Some weeks as many as 6!! My Dad is amazing. He is also a carer for my Mam and one of my brothers. He has a heart of gold.

In truth, I don’t really have many friends any more. They either disappeared when I got ill or when I got divorced. But that’s fine because I’d rather have a small number of true friends than a large circle who don’t really care.

My best friends are hubby and my daughter. We are such a solid unit. We would do anything for each other. I am very, very lucky to actually share a home with my best friends. I’ll be devastated when the time comes for Meg to leave home. But I’ve got some time yet.

So I might be at the top end of severe but I’m actually pretty happy. I’m surrounded with love. Also being forced to slow down allows me to see all the wonderful things around me and to savour life in a way that I couldn’t before.


Today I am grateful for:

  1. A wonderful family.
  2. The small wonders that surround us each and every day.
  3. The internet, which allows me to connect with so many inspiring people.
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