A conversation with my boyfriend this evening:
Me: Why am I in such bad shape. My body is a wreck. Even when I ran 10 miles [last October] I was a disaster.
Boyfriend: Disaster? How??
Me: Just is. I never feel strong.
BF: But you aren’t doing any strength exercises
Me: True. But I am running. I’m just so tired after running that strength training and flexibility work eludes me.
BF: Why are you pushing yourself so hard?
Me: I’m not pushing myself at all. And yet I’m knackered.
BF: Love, running, core, swimming and a Phd is pushing a lot. [N.b. I want to go swimming but I haven’t managed it yet]
Me: Not really. Just soooo tired all the time. Other people manage with more.
BF: So what? Other people aren’t getting over CFS.
Me: I’ll never get over it.
There are two different kinds of hurt in my life:
- The first is the pain/soreness you experience pushing yourself to get fitter. It’s a “normal” kind of pain. I don’t over-push myself but (usually) push boundaries to make my body change. To get fitter. To endure better.
- The other kind of pain is far worse. It’s the nagging pain of C.F.S. The phantom pains with no obvious cause. The burn in your muscle from basic movement like lifting your arms to take a drink of water. The total exhaustion and fatigue that both of these hurts cause. The mental exhaustion from it can be even worse at time.
I’m having a hell of a time telling these two pains apart at the moment. I have no idea when to push against C.F.S. Or how to tell if I am just succumbing to laziness. Or identifying if I’m making myself ill-er.
I honestly have no idea and it’s troubling me. If I run today will I be too ill to go to work tomorrow? If I cycle this afternoon will I be too exhausted to see my boyfriend next weekend? If I get up and make a cup of tea will I be in bed for the next week?
At times I don’t feel like a real person anymore. I don’t remember what it feels like to be normal. I don’t remember where my limits were to figure out where they should be now. Currently, I try to go to work. I try to “fix” my body. I try to be a “normal” girlfriend. I try to be a friend that is around and social and not just locked away napping or lazing. But I am continuing to fail juggling these things. To make it worse I’m so busy trying to cope with them as a collective that I am failing at each of them individually. Disastrously.
My boyfriend went on to say something along the lines of “F**k sake love, I think if anyone was doing what you are they would be tired all the time too. I am tired every evening, and all I have done is gone to work.”
Today I accidently went for a long cycle ride (don’t ask…). I went 10 miles (!) and it took me a whopping 1 hour and 20 minutes. I’m not too worried I was slow. I’m not used to cycling and my brain was so foggy (foggy enough to not query the wisdom of cycling so long) that I just focused on enjoying the view and being road safe. In the afternoon a friend of mine from work came over and we made peanut butter chocolate cups, and glittery chocolate dinosaurs. It was great. But in a normal person’s life that was 4 hours of their Saturday. In my life that was my Saturday and probably most of Sunday will be spent recovering. Tomorrow is meant to be long run (relative term – I’m thinking 4 miles) day. Hmm. I don’t know if this will happen. Currently, it hurts to lift my hands to type. My muscles are burning in my arms.
Most people with C.F.S. (or other chronic illnesses) at this point are probably thinking “F.U. b***h. You’re one of the lucky one who gets to walk again. Who at least get to try to have a normal life. You get no right to complain. You should be f**king thankful that you have it as good as you do” and they are right. And I am grateful. Yet I still feel in limbo and I’m not sure of the path to take to get well.
Tonight I am questioning if I will get well. And wondering what “well” even constitutes. What do I wan’t to achieve? Most people never really completely recover from C.F.S. (apparently) so will I even recognise “well”, as in the best my health is ever going to get, if I get there? Should I push try push boundaries or just shut up, put up and just be grateful that I am not super ill anymore?
I’m not hosting a pity party I just really wish I knew the answers to these questions. I’m a little scared that the only way to find the answers (and move on with my life) runs a high probability of me making myself very, very ill in the process.
I know tomorrow I will feel better. I know eventually I will get back running. Life will roll on and I’ll bounce back to my usual positive self. I’ll even enjoy the challenge of beating C.F.S.! However, tonight I wish I could see five years into the future. See who I am at the end of all this, if I ever find an end to all this…
In other news my ass is killing me from the cycle. Probably good for it though. Especially after all those peanut butter cups. Yum.