I ache from the top of my head all the way down to my toes. I get tired of hurting, I get tired of explaining myself, I get tired of ignorance, I’m sure many are tired of reading and hearing about my struggles. Welcome to my life, this is my struggle and I have to live with it. I’m not asking nor do I want sympathy, I’m doing okay. I share my struggles in hope it helps others understand, but to also show those who are suffering from any invisible conditions that they are not alone. Those who are struggling to get out of bed having no motivation due to the sheer pain and exhaustion, I get days like that too, it is not laziness.
Those of you who are in pain every day, listen to your body and don’t feel bad for needing to rest or cancel plans. If we don’t rest, we will fall into a downward spiral never being able to pull ourselves out of it. Find people who understand and will listen, ignore those with narrow minds. Your pains are real, you would love for these pains to vanish, you wish that simple exercise and change of diets would work. You hold onto those old wives tales as they may have a placebo effect on you. You curl into a ball at night with tears flowing down your cheeks, wondering how on earth will you be able to cope with this condition for the rest of your life. You don’t wake up your spouse sleeping next to you, or pick up the phone to call someone close, because you feel like a burden. You cry in frustration when you hear or see arrogant comments being made from people who have no understanding of the pain we go through. You sometimes shut yourself from the world because you don’t want people to see you on your really bad days. You get that burst of energy, that sweet, sweet release from the burden of stuff joints that you go on a cleaning frenzy. You waste that energy on things you wanted done as you never know when you’ll get that energy back. You put on a smile, you laugh, you talk away as if you are in no pain at all. Truth is, you are used to it, and we have become good at hiding our symptoms.
parenting with this condition is hard too, you feel useless parent on days you are unable to do as much. Whenever you see that concern look on your child’s face and they can see through your fake smiles, you feel defeated, you feel guilt, you try to over compensate with taking them out and getting them stuff. You need to realise that they just want time with you, and only you as they make the most wonderful memories. You get those dark thoughts and as you snap out of it, you look at your child and you punish yourself for ever feeling the way you do. Your memory is awful, so you use post it notes on the fridge alongside forms that need to be filled in, what days they need their pe kit for school. You walk them to school no matter the weather and fight back those tears for fear you will be stared at, the worse thing isn’t drawing attention to yourself. You kiss your beautiful child and tell them to have a good day in school. But that odd day when they turn around and ask a question like “are you in a lot of pain today?” It leaves you feeling terrible, you don’t want them to remember you being in pain all the time.
being a partner husband/wife with a chronic condition is hard. You feel guilt if you find it too painful to have intercourse one night, even if they assure you it’s okay. You feel guilt, you feel annoyed and alone due to it. You know you are a team, you feel like a burden when they pick up your slack and help you. They don’t see it as a burden, but we do. On flare ups they help wash and clothe you. You feel guilt as you won’t be able to help them as much as they help you. You reassure them when they are down, you pick them up and help in any way possible, but you still question why they stay with you because you are in so much pain and they end up running around for you.
working with this pain, this exhaustion is so freaking hard too. As it’s invisible coworkers may see you as over dramatic, you feel you are a burden on them, you try to stay awake, you try to remember what you were last doing, you start getting pains in your hands as you type/write but you need to keep going otherwise you’ll forget all that information. During a flare up if you succeed into work the time painfully goes really slow, you will have a lot of absents due to unpredictable flares, which in return can bring up meetings in work, you miss out on bonus pays as you had too many sick days. Your employer tries to help in so many ways, but your health is a bitch and you have to decide to carry on this way or leave. Your rest days are literally that, you sleep on your days off and the days awake are spent in work your pains exhausts you.
living is hard when in pain 24/7, it’s like having a constant flu. It never goes away, carrying heavy chains around you that tightens on each step you take, it also burns, it tingles, it’s sharp shooting pains. You question if death is the best way out than suffering in this pain.
I have an understanding of how you feel, as it’s what I go through. You are stronger than you believe, don’t over exert yourself I know easier said than done. If your body is tired and sore, when you find time to …sleep! Don’t feel bad for it you are not lazy, your body needs it. Don’t fight it as that aggravates your symptoms. Ask for help, be it friends, family, neighbour, support workers etc… you will be amazed how much help and support are out there. There is support out there for everyone, you have to be the one that looks for it. This pain won’t ever go away, but we can learn how to cope with it better. Take small walks when you can, try doing a small walk at least once to twice a week and build up from there. Inhale that fresh air. Vent about your symptoms to a person, in a diary or even a blog!
Join local support groups on social networking sites with people who suffer the same condition as yourself.
having an invisible illness is hard as we have so many judgments as we look okay. If we weren’t so quickly judged we’d more than likely be able to cope a bit better.
I spent a year feeling sorry for myself, I was able to pull myself up. I’m now learning to drive, doing courses, getting all the help and support I need to not only help manage my condition, but so I can cope with it better to help my children, and to go back into work and a career I am passionate about. Health professionals strongly advise I’m not ready to go back to work, and I’m now following their advice by taking small baby steps. I’ll reach my goals in life, but first I have to be more kind to myself.
You got this, I believe in you, don’t give up.
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Lethargy had finally sodded off, I felt a little better. I decided to walk the puppy with my husband, we had a good hour walk. My husband treated me to a meal out to celebrate my birthday, it was a lovely treat! My wrist is very achy at the moment so wearing a wrist support. I was in tears after as my legs were killing me! Such intense sharp pain penatrated through my knees. I couldn’t sit comfortable, soon as we got back home my husband ran a hot salt bath for me, he knows when my pains are that intense I have a hot bath as hot as I can cope. I then lay down straight after. My husband sorted our children’s lunches and kept up with house work for me. So I had my tramadol, got my legs elevated only to be woken up around 2am due to the pain. I wanted to scream, claw my eyes out, saw my legs off… you get the picture, it was fucking agonising! My husband rushed to get my tramadol and bottle of water from the fridge. I finally settled down again, only to wake up again. Pain isn’t too intense this time round, I believe I probably over done it as I just got over a flare up to then go for long walk as I did. 🙈 I’m more than likely going to be using my crutches today to get by, I have my course to do as well. The joys eh?
The highs and lows of fibromyalgia 