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.