Grief
We grieve who we were before the pain started, what we could achieve daily, how we lived our life without discomfort or irritation. I think I spent my entire adult life completely irritated with myself constantly. I spent so much time beating myself up for not being strong enough to carry the burden of the constant daily pain, for not being fast enough to complete my daily tasks. Simple things, like hoovering, cleaning, making beds and for being so exhausted after simply going out shopping. For not having the energy daily, for feeling so irritated with others because I couldn’t be who I once was and I couldn’t do what they did without becoming so tired or so dragged down by the constant burning, shredding, searing irritation that was my condition.
I felt I couldn’t talk about it because - where do you start? How do you explain how this thing with no name made you feel? What I didn’t realise though was that my whole attitude, frustration and irritation could do, and was making my condition a whole lot worse. The stupidity of the mind set I had at that time of pushing myself to ridiculous limits was actually making this condition worse. The limits made my whole body so tense, which in turn made the pain levels totally exaggerated. The constant “to do lists” made my head spin and kept me awake at night and unable to relax, but you have to admit that this being disabled malarkey doesn’t half get boring!?
The same crap every day, our lives becoming filled up with “what level of pain are we on today?”, “what medication will help?”, “what am I actually able to achieve today?”, blah blah blah, boring!!!! It all becomes one big spiral of pain, drugs, rest. Only, you can’t rest because your stupid legs are doing an Irish jig all the time. You can’t busy yourself with housework because you become too exhausted, or again your legs or your hips hurt. You can’t clean the windows for example, because your shoulders hurt or you develop a random pain in your elbow which then goes on to last for 3 weeks! OH. MY. LIFE. BORING!!!!!
I always, and I mean daily, wish I could slouch on the sofa like my teenage daughter does, just allowing every single inch of my body sink into utter heaven, just the thought of being so comfortable that you begin to doze off because that every inch is so relaxed BUT what I have to do is carry on with stupid tasks until I feel that I can no longer carry on, that I can literally do no more. Normally I know I’m at that point when I can feel myself dozing off while sitting on the toilet having a pee (I can literally pee for England) so the cycle begins again. I take my meds so that my body can start to relax, try and listen to my body and start winding down. Part of my routine now means I try and stop everything by 7pm. It doesn’t always work, but I find by simply having that point at which I have to aim for daily helps.
Other methods I’ve been trying out recently is meditation for me to achieve that I actually have to lie on an acupressure mat because the discomfort. I actually like it however. The mat actually takes my mind off the other pains regularly flowing through my body. Normally I manage a good 10-20 minutes of what I would class as quiet contemplation where I don’t have to constantly fidget or change position all the time. Well, normally 10-20 minutes. It’s usually dependant on how bored one of the dogs become watching me and then when they hit that level of boredom one of them normally sits on my head or chest and well, that puts and end to that.
Sometimes, when my mind is bored I sit and think and I often wonder how the hell do we, as humans, as chronic illness sufferers, actually manage to function daily? How do we put that everlasting smile on our faces and work through our days? How do we even manage to get out of bed on our worst of worst days? My answer, I think, is because we have to. If we didn’t, what life would we have? There is no way I am ever going to allow myself to sink into that dark hole that is depression, because I feel that would truly be the end, wouldn’t it? Spending time in your head and being so deep in that hole that there never appears any way out, so to avoid that I give myself daily challenges and having my dogs normally helps these challenges.
One theory out there is the Spoon challenge. Giving simple daily tasks is my method. Some would laugh at my tasks and I do too, to be fair. The first challenge is actually getting out of bed. In one way Im lucky because my kids are not as young anymore. Well, they’re not actually kids at 27, 23 and 15, so they don’t need me as much as before. So. I now have the option of a lie in if I need it, but remember I’ve done the school runs, I’ve completed the tasks of 7am starts and that constant nagging that we have to do daily of “hurry up”, “eat your breakfast”, “come here I’ll help you get dressed”, “clean your teeth”, “get your coat on”, “out the door, in the car”, “lets go”. Yes, been there, got the t-shirt.
Now, all I have on during a morning is 3 dogs shouting at me to get up, so when I feel like my legs will carry me that’s my first task completed. Next, I have my breakfast then another 2 cups of tea, then I know its the next step - the daily dog walk. To be honest, I need this more than them because this is what lifts my heavy mood that appears from just getting up when that first level of “Ouch!” happens and those first twinges of my whole body clicking into action.
Next, home to another 2 cups of tea and if I don’t have work that day, housework. When it comes to housework, I always assess how my body feels and assess how much I can do that day. Now, before I felt that I had to do the whole house otherwise I was a failure, but now I do what I can. So, if I manage the hoovering and the dishes, that’s good enough for me. Next exercise (well, Pilates) is bliss… utter bliss. Stretching my body, moving and flowing, taking the pain away with stretching and breathing. Yes, it’s short-lived, but just for however long I can manage it, it is pure heaven for me.
Now I’m at mid afternoon. I don’t eat much during the day, only breakfast and I know that’s wrong because we need fuel and drinking copious amounts of tea simply isn’t enough, so now I’ve introduced the fruit smoothie full of all that stuff that’s good for you. This gets me through until tea time. Next challenge of the afternoon is the school run. I normally double that up with any shopping I may need that day, but that’s another tick on my list.
I just need to get through the tea time challenge now (I’m the cook at home) because I don’t have a huge appetite. I now eat simple stuff i.e. jacket potatoes with whatever filling, or chicken, or fish with rice or salad. However simple my food may be, I’m having something and I’m making that necessary effort to look after myself. Then the final hurdle is tea dishes and then a bath. I love this part! Epsom salts and bubbles, again for a short while, ease my pain levels so I stretch this one out for as long as I can. Then it’s an early bedtime to read. I find when I’m sitting in the living room I struggle to relax and can’t concentrate on the mind-numbingly boring TV, so reading entertains me more and of course we need to keep our brain functioning otherwise it’ll become a mass of fibro fog jelly wobbling around in our skulls.
These silly daily steps that I have may seem boring to some, but for me it’s my levels of survival and these things bring me simple joy. I choose not to have a social life anymore, my friend circle is my family: my mam, my sister and my kids and that’s not sad, it’s necessary. This is because my experience of friendship is constant pressure, pressure to do things, pressure to socialise and I no longer want to do that. I’ve done it all in my healthy years and now it’s essential that I slow down. I’ve grieved the other person I was in that aspect and now no longer feel I have to be that person anymore. I’ve been in the cocoon and now Ive metamorphosised as ME, a person with a chronic illness who is living her life to the best of her ability.
During the years of the diagnosis, we spend enough time grieving what and who we’ve lost. Our days are spent making appointments to ask for help, time being spent travelling to Physio appointments, going through the different steps of the Physio treatment plans which is great and fab during the process but is not a long term solution for an individual with a chronic illness. Every appointment attended features the same list of questions asked – ‘Do you have depression, anxiety ? do you have suicidal thoughts, near the end of the years of toing and froing and constantly begging each professional for help, my regular answer became “if someone doesn’t help me, and soon, I’m going to start suffering from all 3 and my new address will be the edge of the town bridge if you need to find me”.
We, along with all these appointments and regularly similar conversations, are also going through the same stages which are:
Stage 1
Constant suffering, unbearable pain levels, no answers for what we have, no name for it. Either constant rejection from the medical professionals, pain killers of all kinds and colours tried and tested but nothing to take the edge off the pain. The constant fatigue, the constant feeling of being a failure, the constant pushing your body to stupid levels.
Stage 2
Diagnosis. Finally a name, finally a light at the end of the tunnel, finally feeling that help is on the horizon. All I ever wanted was a daily or weekly injection which magically took the pain away, but unfortunately it doesn’t exist. So, now you’re back to a condition with a name, but nothing to cure it. Now, you go down the route of tried and tested medications, giving you a long list of drugs and if they worked a big tick if they didn’t, an even bigger cross.
Stage 3
Acceptance and realisation that you have to help yourself to live your life with this condition, the changes that’s needed have to be made by YOU and no one else can help you, so you need to find other ways to live your life – and it’s quite easy once you start!