fibromyalgia

A great day usually always precedes a not-so-great day

Yesterday I turned 30 and I enjoyed every minute of it. I had tried to guess what Bex had planned for me, but there were a few unexpected surprises she’d kept hidden. Ok, so we now know I’m not that psychic.
Bex had offered to pay the adoption fee for Mya when we first met her in July. So I was aware of that, although she did surprise me with a card from Mya, which choked me a little. See pics below:

I was not expecting that and the amount of thought and effort that had gone into that is amazing. I love it.

Anyway, after having a very fun-filled day, with LOTS of laughter  (& Bridget Jones’s Baby) I knew of course that today would be a challenge. I had a good sleep and woke up feeling perky. Didn’t last too long, but I did get a hyper-second wind and suddenly started going too fast. Oops. I’d got to that point where I felt so overwhelmed by everything I had to do, I went into fast forward mode. You know, you start by worrying a little, then a lot, then you start freaking out, then you start going crazy-quick? I know it isn’t just me. Hmm, strange now when I think back. Why would I go hyper in the presence of Ms Pixie Pickett? I’m always so calm around the high-pitched, hyperactive, black-coffee guzzler? 🤔 😁

Today’s not been a quiet, restful day at all. I’ve so much to do before we go away that I’m past caring about having not packed yet 😑 And here I am, writing a blog post while I could be packing. I don’t think I’m too much of a procrastinater am I? I’ll work that one out tomorrow, if I get a minute 🤔😉

On a final note in case anyone is looking to foster or adopt a dog, I would highly recommend “Dogs 4 Rescue”. Based in Irlam, a no-kennel policy dog rescue that rescue any dog they can; mostly those even more unlucky to find themselves born outside of the UK. Hence Mya coming all the way from Bulgaria. 🐶❤ 

You can find the rescue on Facebook ‘Dogs 4 Rescue’ 

When you know what you need to do but you don’t know how to do it.. 

This morning, I toddled off to the hospital for my follow-up appointment with rheumatology. I’d been waiting so long for this, I was desperate to know if my blood tests and mri results showed anything that could explain away my symptoms. Pain, fatigue, headaches every single day. Aching eyes, so sensitive that it’s too bright for me on a dull day. Muscle pains and spasms; eventually my muscles slowly get fatigued too. 1 by 1 I feel them stop trying. That’s when I need to go and lie down. I know if I don’t lie down then, I’ll start feeling sick and eventually start vomiting if I let my body get that exhausted. 

Anyhow, so there I was, I’d toddled off to my appointment and wasn’t waiting too long before I was called through. And every result came back normal.

Now you would imagine, that this is great news. They’re saying there’s no indications of rheumatism, psoriatic arthritis and a few other inflammatory illnesses. That’s great news really. But instead my eyes started burning and I could feel as they slowly filled with tears. Even the chin wobbled – that’s when you know you’re really upset. So with head in hands I sat and wailed as I tried to explain why I was so upset with the good news. Lucky for me, the practitioner understood my upset and disappointment and her understanding and kindness made me worse (always worse when somebody is nice to me haha).

She quite rightly pointed out the disappointment I was met with, because there are no answers. Not much is known about Fibromyalgia, compared to other illnesses, which makes it more difficult to treat. Plus symptoms vary so much between individuals that cases can range from mild to severe. So whilst it is good to know I’ve not got certain inflammatory problems, I am once again left to face the facts. There is still nothing more that can be done, and it’s up to me to accept the pain & fatigue and live my life around them both. Some days, I actually feel ok about it. I sometimes think “fibro and cfs will not rule my life” and I feel a strong determination to fight the bastards. But eventually it catches up with me, pushes me to the ground and traps me there for a while. 

Rather than feel like it’s chasing me all the time, I need to be able to stop running from it, and stop letting it control everything. Even simpler; I need to accept that this is all part of my life. That I’ll hurt and feel tired and I need to adapt and get on with it.

When you know what you need to do, but you don’t know how to do it, what happens then? Does anybody know how to accept something you don’t want to accept? I need to speed up the process ‘cos I can’t cope with this vicious cycle of emotions regarding my health. I’m exhausted!

Anyway. I managed to get home through my tears, and yelled even more when I was greeted by my 3 beautiful babies with love and affection. I collapsed in a heap on the floor and sobbed for a bit. One thing I felt that sticks out; defeated!

The day’s almost over with now. I’m exhausted and my poor eyes are puffy, tired, red and sore. I can’t wait until sleep time. Hopefully tomorrow will feel slightly easier. One can hope! 

It’s ok… wait… ouch… ugh… wtf?! 

Today is one of those days. I woke up and felt alright. I had my whole day planned out in front of me and was looking forward to what lay ahead. 

12 hours later, I’m in bed feeling like I’ve failed because I didn’t get through everything I had planned. 

There’s a very familiar cycle of emotions I, and many others like me, will go through on a regular basis… when struggling with a chronic health condition. In my case that’s fibromyalgia (FM) and chronic fatigue syndrome (CFS). I know a lot of others who have a diagnosis of FM, but equally, I know a lot of people who have never heard of it or do not understand what it is exactly. My GP once summed it up quite clearly for me when I asked her how she would describe FM to somebody. She said “inflammation or pain in any of the soft tissue; so anything that isn’t bone. This will also include soft tissues around the organs and explains why it sometimes feels like organ pain too”. I think that’s spot on. I always feel bruised all over. So if somebody taps my arm to get my attention, it hurts. The slightest of touches can be extremely sore. On top of that is the tendonitis pain; mostly in my lower arms/wrists/fingers and lower legs/ankles/feet. Not to mention the muscle aches, the muscle fatigue, nerve pains from the sciatic nerve shooting down my legs. I am 30 this month, and when I say that I feel like I am trapped in the body of a 90 year old, I genuinely am not exaggerating.

As if the pain as mentioned above were not bad enough, there’s also the CFS, which surprisingly for some, is more debilitating than the FM. It’s not just about feeling tired, sleepy, lethargic. It’s the feeling that every muscle in your body has been starved of energh and has nothing left in it. Like a car without fuel, my body just will not work when the fatigue reaches its peak. I struggle to even open my eyes, have a drink, lift my arm. When I’m like that it is petrifying. It is almost like sleep-paralysis (if you’ve ever experienced it). You are awake, and kinda know what’s going on around you, but you’re unable to respond verbally or physically. I try to speak, but my muscles don’t have the energy to move my mouth and though I make sounds, nothing that makes any sense comes out.

So I guess this cycle I was initially wanting to talk about is pretty understandable for anyone experiencing chronic problems.

This morning, I was at the “I’ve got this” stage. Then gradually as time went on I started to hurt, and the fatigue started to hit me. I had to cancel the rest of my plans for this afternoon and stay home to rest. Then I tried to stay out of bed and keep busy… but I got to the “I can’t do this” stage and crawled up to bed. Then the anger; I felt annoyed that I’d missed out on things again. I felt annoyed that I couldn’t stay up longer than I wanted. I was peed off that I can’t plan for tomorrow because I just have to see how I feel. I hate not knowing what I’m doing but have also learned never to agree to it because I hate letting people down even more than I hate missing out. 

So there you have it… I’m still stuck on the anger. I probably will be until morning now where it’s likely I’ll feel more in control. How long that sense of control will last, is anyones guess. But it does help me to share this stuff. Only ‘cos it’s tired my eyes out enough to want to sleep now 😉😉

Coming to terms with, and accepting difficult adjustments in life

A lot of my friends and family know a lot about my mental health because it’s been something I’ve always tried to be open and honest about. Fewer know about the physical battle I have with my body.

In 2007 I had glandular fever; which the doctors only picked up on 6 weeks after I’d been infected. I’d spent that whole 6 weeks to and from the doctors, feeling achy, sore and tired. So once I got the diagnosis I felt a bit better for having a valid reason for being in pain and so tired. When other tests came back normal, I felt like the medical staff didn’t believe there was anything wrong with me, and it was only with pestering them that they finally did viral blood tests and found glandular fever.

Months and months went by and I was just feeling more and more tired. I would sleep almost every day until late afternoon, after briefly trying to get up in a morning and soon realising my body was still tired. Months soon became a year, and by this time I started to get painful swellings in my hands. I also constantly felt tender all over – like I was bruised all over but there ware no bruises there. Eventually I was referred to a rheumatologist who diagnosed Fibromyalgia, Chronic Fatigue & Raynaud’s Disease.

Over the years I’ve tried numerous medications and then was told by the pain clinic that they were running out of options with regards to medications. The consultant suggested Tai Chi had benefits with fibro, and also referred me for 6 sessions of acupuncture. Physio also recommended TENs machines, so I got one. A year on and I’m still doing tai chi, taking regular painkillers, exercising gently daily etc. But around Jan 2015, my pain started worsening again. Flare ups were lasting longer and coming more frequently. Time between flares was also reducing. I have deteriorated more this year so far, than I ever have since diagnosis.

Most days now, I can’t get through the day without a nap. If I don’t nap, or at least lie down, my body starts to feel so achy and weak, and I start feeling sick, my head feels all fuzzy and I can’t think straight. If I try to push through it, those feelings just get worse until I start vomiting and feel like I’m about to collapse. Then I have no choice but to rest.

I could have the best nights sleep and still never wake fully refreshed. I have to drag myself out of bed and fight soooo hard to stop myself cancelling whatever I’ve got on and going back to bed. If I did that, I would literally never be able get anything done. What I’ve had to figure out, and it’s took me about 6 months to work out, is when do I need to actually listen to my body and rest. It’s been so difficult trying to work out if I’m exhausted, or exhausted exhausted; pushed to my limits or beyond kind of exhausted. Do I want to go back to bed because I’m not motivated enough? In which case I have to push myself to stay up and get things done. Or is it that I want to go back to bed because I actually do need to rest? In which case it’s really important I do, otherwise I’ll make myself ill by overdoing it.

Overdoing it being the next difficult thing I’ve had to work out. If I overdo it one day, I won’t know about it usually until that night or the following day. This is now one of my indicators – I know I need to rest if, the day before, I had a particularly long, busy or strenuous day. I know that my body will then take a few days to fully repair itself (I say fully, I mean back to how it was before overdoing it). So it’s tricky to know how much is too much, when the signs only develop 24 hours later. It’s pretty much been trial and error. People told me to try doing things in short bursts with regular breaks; a common one being do 10 mins of an activity, followed by 10 mins rest and so on. I found this hard, so I made up my own ‘system’ and plodded on.

Somehow I’m learning what “too much” for me personally, is. And I can usually always tell the difference between my “everyday exhaustion” and my exhaustion exhaustion.

The most difficult part for me, and something I’ve struggled with a lot, is coming to terms with the changes in my body. I often say I feel like I’m trapped in the body of an frail old lady. I can’t do things like I used to be able to. What’s even harder about that, is I’m still in my late 20’s; I never expected I’d be so physically limited at this age. People in their 50’s+ have spoken to me about their struggle to come to terms with the fact that they are ageing; that their bodies can no longer do what it used to be able to do. Exercise can become more demanding, health can deteriorate, tiredness kicks in quicker, body aches and pains etc. Looking back on those convsersations, I can completely empathise. It’s so hard to accept that you might never to be able to do certain things that you once could, or even if you can, it may not be with as much satisfaction or enjoyment because of pain, tiredness or other problems.

The fact is, at the moment, my chronic fatigue and fibro pain are debilitating. I am having to really adjust my life to be able to reduce my symptoms as much as I possibly can. I cannot begin to explain to you how hard that is, and the amount of times I’ve sobbed my eyes out because I just don’t want to believe it all is unreal. Thankfully, the tearful outbursts are not that often. Mostly I try to just get on with it. I get told off by people around me for doing too much sometimes, but I am really trying. I always swore that I would never let my physical problems stop me from doing anything, so it’s hard when, for example, I need help with housework, because I don’t ask for help and keep trying to do it myself. One day I’ll learn, but for now I’m still learning too many other things.