If my boys were playing and one of them accidentally banged into me, it hurt so much, and the pain took a long time to go away. Crazy right? Who knew babies could be so brutal! I stubbed my toe one time, which we all know can be painful, but this was something else. It was so bad I thought I’d broken my toe, and I couldn’t seem to get over the pain. Ha, ha, yes, I know I may be a drama queen but, joking aside, it started to worry me.
And then there were two
I mentioned this at my next check-up, which was when they started to talk about another condition — fibromyalgia. When my doctor explained more it started to make sense. He told me that fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic muscle pain, fatigue, sleep problems, and painful tender points or trigger points, which can be relieved through medication, lifestyle changes and stress management.
Well, I could relate to almost all of this even though I hadn’t heard of it before. They asked me a series of questions and I ticked all the boxes. Then I thought, ‘Ah, maybe I don’t have RA after all, and it has been fibromyalgia all along. Maybe now things will be different’. Unfortunately, that wasn’t the case. They told me fibromyalgia exists alongside RA in a lot of cases. It just meant I had two conditions to deal with instead of one. Just what I needed to hear, right?
I took a few leaflets home and did some research on my own (I like to know what’s going on inside my body). Although it did kind of set me back, it didn’t affect me as much as when I found out I had RA. It was almost as though I was expecting it. Weird to say I know but it didn’t come as too much of a shock, maybe because I hadn’t processed it properly. I still didn’t know much about it at this point. I did discover there are treatments available to help with fibromyalgia, but since there are numerous symptoms no single treatment covers all of them.
Don’t put off till tomorrow…
The doctors offered me treatment and medications but, because of my anxiety around taking medications and my difficulty controlling the RA, I decided I would like to get that under control first. I could then tackle the fibromyalgia if needed. The idea of being on as little medication as possible was appealing, so I was hoping that once one was under control the other wouldn’t be so bad. It may sound silly, but I thought it was the best thing for me at the times. As it happens, I still think it’s the best thing for me now.
I didn’t tell the doctors about my anxiety towards taking the methotrexate at this point, because I couldn’t find the right words. I convinced myself that, knowing I was suffering two major conditions, maybe it would push me to take the medication as I should have been all along. I kept telling myself that I really had to do stop putting it off, it was a case of, if I don’t start now than when? But it just never felt right — and each day I was getting worse and suffering more. The more I learned the more pressure I felt until I didn’t know what to do with myself or how to handle any of it.
What’s the worst that can happen?
But I knew I had to take that next injection. After all I had been through, I would kick myself if I didn’t. It came to the day and I felt sick with anticipation — the boys were in bed so there was no extra stress or rushing and I could, hopefully, relax afterwards. I sat for a while, just psyching myself up to do it, and just to clarify for anybody due to start or in discussions about methotrexate injections, they do not hurt — the injection goes just below the surface of the skin and usually it is just a prick and you barely feel a thing. It’s administered by means of a pre-loaded “pen”, which you press on to the skin after taking the cap off, and then press the button on the top to inject yourself, which it does with an accompanying click. To be honest, my fear of doing it stemmed from the fact I had administered it wrong that one time, which put me off doing it again. So please, don’t be put off by my stop-start journey with all this. I’m just giving you the full picture of my experience to maybe help with yours.
Well, I was sitting there just staring at the pen and sometimes pressing it to my skin ready to click before taking it away again, and really kicking myself when I did. I would literally have an argument with myself, calling myself all sorts of names. Ha, ha. I asked Mike to come and help, which of course he did. He held my hand and told me I had this, he reassured me I would be absolutely fine, and I was arguing with myself for no reason. Well... to cut a long story short, after about 30 mins of faffing around I did it. Woah, what a relief, I know and yes, as you can guess, it was painless. I was so proud of myself, but I knew I had to keep at it. Yet still the thought popped up that it was only seven days before I had to do it again. I was already starting to worry about failing!
Family steps in
To add to the worry, during the next week I had one of the worst flare ups I’ve ever had. I was staying at my mum’s at the time and thankfully both her and my sister were on hand to help me. Basically, I woke up and it instantly hit me. I couldn’t even lift my head off the pillow and I just started to cry. Through it I was begging myself to be okay and to just get up and be normal. I hoped I had just slept funny and could carry on. Harry had woken up and he always asks me to pick him up and carry him down the stairs when he is still a bit sleepy. I crawled out of bed and to the door, but I couldn’t do any more. I was crying more because I felt I was failing him than for myself. My sister came from her bedroom and I could see in her eyes that she instantly knew. She took the boys downstairs and eventually I made it down too. I can't explain to you the pain I was that day, but I felt as if somebody had taken a hammer to every bone in my body, over and over. Drama queen again you may think but honestly, this was the reality of how I was feeling. I couldn’t bend my knees, so if I knelt down, I wasn’t getting back up again. I couldn’t lift a coffee mug without feeling like I was lifting a brick with both arms broken. I couldn’t even move my head from side to side. So, as you can probably imagine, that day I was absolutely no use to the boys or anyone. That was when I realised what an idiot I had been. If I’d taken my medication like I should have been then this would probably not be happening.
Desperate times need different measures
At this time, I was off the steroids again, as they never let me have them for too long. Its either a 4- or 6-week course and once it's over, they like to see how I react. Of course, they were assuming I was taking my other meds, so they probably never expected me to be in this situation. I called and called the nurse advice line and my doctor but a lot of the time you have to leave a message and wait for a call back, so I looked some help while I was waiting.
Somebody had previously mentioned Cannabidiol (CBD oil) to me, but it had never crossed my mind to try it. Until now. If it was going to make me feel even slightly better, then I wanted to try it. It’s derived from hemp, not marijuana as you might think from the name, so it’s not going to get you high. And it doesn’t treat underlying illness, just relieves some of the symptoms. Anyway, I sent Mike out to get some for me and I took it as soon as I could. I probably took more than I should to be honest as I was just desperate for something to help me. Unfortunately, that day it didn’t help much; my pain eased but I was nowhere near able to function as I should have been. I went to bed early and prayed I would wake up feeling human and once again able to function. But when I woke the next day, although I felt slightly better the situation was still the same, still horrendous, and all I kept thinking was, what I had done to deserve this, to have to go through such torture?
Was it simply karma, my own fault for not doing what I should have done from the start?