I have always been broken however, growing up I never knew it. I knew I was in pain, I knew it hurt when I ran or climbed trees and that I had to take a nap after school, even as a teen before going out to play with friends. What I didn’t know is that this wasn’t normal. My parents never allowed me to think I was different (in a good way) or that there was anything I couldn’t do. If my joints hurt I would strap them up, take painkillers and off I went, I didn’t know any different. Even as a child I was judged by others for my conditions, other children/teens/parents telling me I was milking it and I should be healed by now or that I shouldn’t have got an injury from that activity but at no point did it knock my confidence. As a child/teen I had a huge amount of self confidence, was outgoing and was extremely sociable.
It all went pear shaped a year or so after I had Riley. It started with a painful knee and swollen hands. A year or so later and I was reduced to a person I barely recognised. Someone who had once scrambled around the soft play for hours on end with my children now suddenly I could hardly get off the sofa. I was on several kinds of pain medications, none of them really making a difference and friends I once had disappeared from my life, as I was no longer able to join them on night outs or was no longer fun to be around, constantly either being in pain or perpetually exhausted.
Accepting the new disabled me has been beyond difficult and there are days now that I still don’t. I don’t like referring to myself as disabled and will often use the phrase as broken or controversially, crippled (I use this phrase as I am crippled by the pain rather than physically disabled by an injury, I hope I don’t cause offence and do not use the term in regards to anyone else), I use humour as a defence mechanism.
I lost the person I was and became a recluse, I developed anxiety and started to have panic attacks for the first time in my life. I can no longer deal with large crowds and when we go to Disney I have to take medication to cope. I know people will ask why I do it if it causes so much anxiety and I will cover it in more detail in a later Disney blog but in short my illnesses have stolen enough from my children, my family and myself they are not having this as well, it is our family reset, our respite from life, our escape.
I have good days and bad days. On the bad days I use a wheelchair and mobility scooter. On my OK/good days I use my walking stick. It has taken a lot to feel even remotely comfortable using these aids. At 30 odd I am constantly given sideways looks or people are just shameless and outright ask me ‘what’s your problem, aren’t you too young for that?’ It has taken a lot to get over the sheer shame and embarrassment of using them. I am mostly over it but still have the odd flame of embarrassment in new situations or meeting old friends who don’t know my situation.
The problem with fibromyalgia is there are people who do not believe it is real, doctors included. It is a condition that is not visible and if you know what you are talking about is easily faked, so it is amazing how many people believe I am faking my illness. One of the reasons for this is they only see me on my good days because on my bad days I can’t leave the house. The bits they don’t see are where I go without food because either everybody is at work and I don’t have the strength to fix myself something or I honestly don’t have the strength to continually lift the fork to my mouth so I just go without. The fact I have to have hubby help me in and out the shower as I can’t do it by myself or the days I am found sobbing (never where the children can see) because even my strongest painkillers don’t bring even the slightest bit of relief. And yet I still have to deal with the judgement of others who believe they know better.
It is impossible to go through chronic illnesses and not have moments when your mood is low. Mental health is massively affected by the outside world upon us. It is very difficult to ask for help when needed, it is even harder to accept that help when it is offered. It has taken me years to understand I am not a weaker person by accepting help from those who love me, although for the longest time it made me cross that I had to. And I ended up in a vicious cycle of pain, low mood because of the pain, needing help, low mood because of needing help, refusing it, in pain because I wasn’t having help, and restarting the cycle.
You live with continuous self doubt. Is this all my children are going to remember? Am I giving them a good enough childhood? Am I being a good enough wife? Sister? Friend? The answer is yes, you adjust. No, I can’t run around the soft play for hours with the babies anymore but I can sit at the table and do crafts with them, I can play board games with them and we now save our pennies for memory money to take them to Disney when we can. It is different, but the best I can do and that is what matters, it just took awhile for me to understand that.
I was brought up with a strong work ethic, if you’re not dead you go to work, I left work to raise the babies and planned to return when they were both at school. I can’t return at this point due to pain and the children’s extra needs (multiple appointments, therapies and the worry of them not coping at school, (back before we decided to home ed). It’s hard not working and I still have bad days now as I really enjoyed my job. If not in a paid position the plan was to volunteer when the children were at school but I’m unreliable. I don’t know until I wake whether it is going to be a good day or a bad day and I hate to let people down. So now I am filling my time with children, appointments, futures and forms and I have just started developing my first crochet patterns.
If there is any advice I can give and I am by no means an expert, start by talking to others when you are low or struggling. Drag yourself off the sofa and out for a walk, even if this is just up and down your path, the air and nature does wonders for your mental health and be kind to yourself. Put on that lipgloss, do your hair (gents do blokey things, sorry I’m at a loss here). Take time for yourself. Cancel plans if you need to. Remember you need to do this for you and you deserve it, don’t let people tell you that you don’t need this time.
Am I stronger for it? Some days yes, others no. Some days it wears me down so much I can barely lift my head from the pillow but one of my babies will need something so I do, they are my driving force. I get up, I get dressed (even if that is into comfies, clean pants and PJ’s, this absolutely counts as getting dressed on a bad day) and I drag myself to the sofa. My disabilities are part of my true self but I will not let them define who I am. Yes I am disabled but ultimately I am a mother, wife, sister and Kelly first.
*As a slight side note almost every health professional you speak to will mention losing weight to help with fibro. Any doctor who tells you fibro/chronic illness is cured by exercise, diet, losing weight, yoga or a positive attitude is talking poop and you need to run as fast as humanly possible, you know as fast as you can being broken and all, in the opposite direction to someone who actually has a clue (I mean seriously there is a rapper called doc brown with a song, kick him in the b*lls and run away, look it up). I have recently lost 2 stone, does it help with all my symptoms? Nope. Does it help my pain levels? Hell no! I’m in the second worst flare of my life. What it has done is help with my mental health. It has helped me mentally cope more. It has given me a more positive outlook and a better mental ability to cope this time rather than just curling up on the sofa and almost wishing for death. I am still getting out there and living. I still highly recommend doing it but not for anyone else, for you. It has helped me immensely just not in any of the ways I was told it would. Not that I ever believed it would. Sadly it’s just not how chronic illnesses work, especially when they are stacked.
