Things are looking up!

Hi all,

Sorry it’s been a while since my last post! How have you all been?

I just want to say thank you so much to those that kept checking in with me and leaving me lovely messages- it’s so comforting knowing that people are thinking of me and it really did cheer me up :)

I felt like I needed some time out, time to hunker down and properly rest without deadlines and to not put any pressure on myself to be ‘productive’, which has done me the world of good.

As you know, I started taking my biologic medications over a month ago now, which at first kicked my butt with side effects. I had nausea, hives, bloating and a lot of fatigue (which also gave me heart palpitations). I also had a couple of infections which needed antibiotics. I knew I was going to feel worse before feeling better, but I guess I was shocked at how crap I felt almost immediately after taking the medication and this of course had a knock on effect on my mood and mental health.

But my healthcare team suggested that I took some antihistamines with the injection and just wait it out. The antihistamines made me feel a lot better almost instantly which was great. Still a lot of fatigue, but the other symptoms went away yey.

Now the fatigue is slowly dissipating over time too. Before I would take the injection and be wiped out for almost the entire two weeks before the next injection, but now the major fatigue lasts around 1-2 days and then I start to come out of the fog again which is promising. Still fatigued, but at a level that I feel comfortable managing by pacing and taking it easy.

I used to shake before giving myself the injection, terrified of what new symptoms would crop up, but now it’s starting to feel like a part of my normal routine and I don’t dread them as much anymore. I make sure I have a little treat to give myself afterwards to get me through- usually Haribo sweets!

I’ve also had less pain overall. Not as much as I would have hoped but it’s still early days and there is still plenty of time for things to improve- they say give it around 3-4 months to see the full effects. It’s weird, it’s almost created different types of pain in different areas of my body but lessened in others. Like my feet have been quite sore, yet my rib pain has lessened. Not sure if that is due to the medication or just a natural change in my disease. However, I am writing it down in my symptom journal and seeing what happens over time.

I also felt that I needed a bit of a break from writing because I was getting a little fed up of hearing myself go on about how ill I felt all the time haha. Does anyone else get that? Getting fed up of hearing yourself moan about stuff, even if there is very good reason to?. There was new symptoms and side effects cropping up almost daily and I was finding it hard to keep up with it myself, let alone share what was happening with those around me. So I felt like I needed to concentrate on getting through it instead of trying to write it all down. It felt messy and complicated and trying to put all my feelings down into something that made sense was making my head hurt!

I think sometimes we need to go into an almost denial and ignoring phase about our illness for pure survival. I didn’t want to talk about it much because it was scary and the more I focused on it and spoke about it, the more upset and anxious I was making myself.

So instead I watched loads of crap TV, lost myself in my imagination via fiction books, went on lovely nature walks and days out in the campervan with my husband, visited friends and family and just tried to live my life the best I could despite the chaos that was happening inside my own body.

And it hasn’t been all doom and gloom!

I do have to celebrate the wins whilst they come up and remember where I was a year ago compared to now. A year ago I was almost always stuck in my bed with pain and fatigue, but just last week I managed a 2 hour walk on a lovely outing in a forest with my husband. The sun has finally started to shine here in England, spring is on its way and it feels amazing. Whilst the walk wasn’t totally pain free, I still managed it, which past Amanda would have been amazed at!! I woke up the next day fully expecting a full on flare up with loads of pain and fatigue, but it didn’t materialise, which is a miracle in itself.

And that’s the funny (not so funny) thing with diseases like mine- they are so variable and unpredictable. You have to learn to not hold on so tightly.

Which is really hard to do for a control freak like me. When you have been so anxious your whole life, you try to control as many variables as possible thinking that’s how you can reduce the risk of bad things happening, but sometimes in life, bad shit just happens regardless. It doesn’t mean you’re a bad person or you haven’t been trying hard enough.

When you have a good day you must celebrate, yet keep realistic expectations that tomorrow may not be the same, but not letting that fact rob you of the joy you are feeling in that moment.

When you have a bad day you have to learn to hunker down and ride it out the best you can, but still have hope that tomorrow could be different. It might not, but it might.

The point is to just keeping moving forwards.

I was getting so fed up with just waiting for things to get magically better before I started living again. I have to be realistic that I may never have a life without pain or fatigue, but I need to continue living my life. There is more to life than just feeling ill.

So I’ve also tried to look ahead to plan my future, which again is really hard to do with such an unreliable body, but I’m trying, as it gives me forward momentum and something to aim for instead of all this dreaded waiting and waiting….

For the first time in two years I’ve been thinking to myself, what does my future look like? What am I going to be doing with the rest of my life? If I am going to always be in some sort of flux, bouncing from different degrees of pain and fatigue- what can I still do, despite all of that?

I have a few things on the horizon that I’m looking forward to sharing with you in the next few weeks…

But until then, I will still be posting but maybe not weekly- it depends how I’m feeling and I don’t want to push it too soon.

In the next week or two I hope to post about my experience of taking biologic medications- how I prepared, how I coped with the side effects, and what I wish I did differently etc- which will hopefully help some of you out there who are about to start them.

Thanks for sticking with me!

Lots of Love and hugs,

Amanda x