June’s Link Party With A Chronic Voice
June 17, 2018
.Reminding, Pacing, Surrendering, Improving & Flowing
I have joined in with a link party this month. The lovely Sheryl over at A Chronic Voice kindly runs a monthly link party as an opportunity for people with chronic illness, chronic fatigue and pain to share, listen and learn from each other. You can join in with the link party here.
Link parties are a great way to gain insight into other people’s worlds, they are a great way to read how other people feel, cope and conquer each day.
Each Month Sheryl provides five prompts and then asks each member of the link party to write a short excerpt for each prompt. The prompts all mean something different to each person so the posts are never the same, we all have our own different and unique answers.
This months prompts are;
Here are my excerpts, please share this post or in fact any of my posts if you can relate to the content. The only way to raise awareness for chronic illness, chronic fatigue and pain is to pass on our thoughts, feelings and experiences. First hand experience is far more valuable than any text book or webpage.
I need to remind myself that I am allowed to rest and I must not feel bad about it. Most days, I try so hard to keep up with the world and often forget that I am supposed to be taking things easy. I am forever trying to keep going and gritting my teeth through pain and exhaustion, Putting on a big smile, I face each day smiling and hide the fact that I sometimes feel like I am drowning.
Living with chronic illness, chronic fatigue and pain, (the three often come hand in hand) sometimes feels like I am stuck in quick sand. One minute I am fighting my way out and almost there, almost out of its boggy grip but then the chronic fatigue strikes and pulls me back under.
I often find the chronic fatigue the worst to deal with. Pain and illness can be easier to understand, not to necessarily accept but easier to understand. Pain can be felt and sometimes I can see it if my limb or joint is swollen. I can feel when enough is enough and know that if I keep pushing, the pain will get worse. This isn’t the case with chronic fatigue, I have no way of preparing myself for the fog and I never see it coming.
Chronic fatigue has no rhyme or reason. Fatigue is a fog that consumes you and it comes from anywhere at anytime. The fog can strike after a full nights sleep, half way through your day, mid afternoon, normally when you least expect it. Chronic Fatigue isn’t just feeling achy and tired, it’s an overwhelming all consuming fog that washes over every part of you.
Sneaky Silent Assassin
I often say chronic fatigue feels like someone has drugged me, almost like that strange post anaesthetic feeling an hour or so after you try to wake up but your body still wants sleep. It hits every muscle in my body and feels like even if I slept for a thousand years, it wouldn’t be enough. My legs feel like lead, my arms feel heavy and my eyes feel like they are full of pollen. My eyes literally stream and it is so hard to keep them open when the fog comes, all they want to do is sleep. I’d take all my chronic pain any day over the chronic fatigue. I am prepared for pain but chronic fatigue is a sneaky silent assassin that will pull the rug from under me when I am least expecting it.
This is something I’m still working on. Pacing is something I’m told to do time and time again especially by the pain team but I find it hard.
I don’t mean pacing like runners who pace their run. Pacing for people with chronic pain, chronic fatigue and chronic illness means doing what you can when you can and resting in between. The Spoon Theory by Christine Miserandino sums up pacing really well and is well worth a read.
I must start taking this on board because I start each day like I can conquer the world and this then leads to crash and burn. I never learn and push myself to the limit and this is something I really need to work on.
Surrendering – To Chronic Illness, Pain and Fatigue
I really need to learn to wave the white flag and surrender.
I need to surrender to my body and accept that this is me now, this is a different me but it’s still me. I’ve got to stop hoping, wishing and praying that I’ll wake up one day and the pain will be gone. This will be hard because I have got through the last few years on hope, hope that one day this will all disappear.
The truth is, I’m not going to wake up one day and suddenly be able to run or dance all night and live the active life I used to live. It’s not going to happen. I can still swim and am virtually pain free in water, I need to hold onto that and embrace it. I need to focus on what I can do and not on what I can’t.
The one thing I love about swimming is that I can play freely with my children. I can pick them up, play, splash and float around with them because we are all weightless under water. The last time I gave my son a piggy back or picked him up on land was when he was four years old. He is almost eleven years old now and I have felt so sad and angry at all those hugs up in my arms, swinging each other around and catching each other in a game of chase missed out on. My life’s been on pause while I’ve tried to recover but time doesn’t stand still and they have grown up in a flash before my eyes.
Boys Will Be Boys
My daughter knows no different bless her, she also likes to do lots of art and craft activities, playing dolls and reading with me so she probably doesn’t notice as much as my son. Boys like to be active and like adventure, my son used to love it when we walked for hours through the woods collecting treasure together. He loved it when we used to climb to the top of the climbing frame and pretend it was our castle. Or when I used to run with him on my back pretending we were aeroplanes. He has had to adapt so much and it’s not fair, he remembers and misses the Mummy that I used to be and that is extremely upsetting for me .
Look On The Bright Side
On land I am always on the side-line watching them run freely. Wishing that I could chase them, give them piggy backs and have fun. wishing that I could join in. In water I can and that is worth more than all the precious jewels in the world to me. This is why I must start embracing what we can do together instead of feeling sad about what we can’t. Sadness and anger can’t change a situation they only make the situation worse. The only way forward is to look on the bright side of life and stay out of the shade.
I must start showing myself some self-love . Instead of being angry at my body for what it can no longer do, I need to be proud of all that it’s overcome and achieved.
I’ll admit something here.
I walk with a stick and can’t walk for long distance or periods of time. There are so many fancy crutches, sticks and walking aids out there that would be far more comfortable to use. Far more comfortable especially on my wrists and hands but no, I still use my bog standard hospital crutches. I really want a pair of Smart Crutches they are so cool and look so comfy but something always stops me. I can’t seem to step away from my boring grey, uncomfortable to use, hospital addition pair?
I use my hospital crutches because they don’t look permanent. They look temporary and people think I’m injured rather than in a permanent state of unsteady on my feet. This is a huge part of acceptance for me and a clear sign that I still struggle to accept what has happened to my body.
Fear Of Judgement
People will often stop me and say, “What have you done?” and I’ll often reply, “Oh I really hurt my pelvis and needed an operation.” This is far easier than explaining the nightmare that followed. It’s far easier than saying, “Well it hurts to walk and has done for years now, my operation was actually three years ago so I should be pain free but unfortunately it doesn’t feel much better. Oh and my other joints swell and hurt now too. my immune systems gone nuts after the stress of it all and they are still trying to get to the bottom of that. I can’t eat most things anymore due to Histamine intolerance and my stomach often causes agonising pain. My digestive system has gone mad oh and I get so tired, I could collapse and fall asleep at your feet. I use my stick due to weakness and pain but thanks for asking!” Who wants to hear that, they’d be sorry they asked, I feel like they wouldn’t want to know and that I would feel judged but I know again that this is all part of my own acceptance.
I find it easy to write about what’s happened or happening and often do on my awareness page, Bump to Birth and Beyond with Chronic Pain and Chronic Illness . However, I find it really hard to explain it face to face because it sounds so negative and like there is no hope, It sounds like I’ll never be better. The truth is, I’m not sure if I will?! People don’t always want to hear that you are stuck in a world of pain and you aren’t sure if you will ever be back to normal, what is normal anyway? Unless you’ve been there it’s hard to understand a life on pause.
I need to accept that this is me for now. It may not be me forever but it’s certainly me for now. Nobody knows when or if the pain or health problems will end.
My body isn’t something to be ashamed of. To have gone through all that it’s been through and to still function enough for me to live my life is amazing. I have to accept, surrender and just let myself be me. Most importantly, let myself be however my body allows me to be!
The first step is to start using my funky walking accessories more and order a pair of Smart Crutches. The key is to stop worrying about forever and focus on what is best for now.
I want to improve the ability within myself to show self love, care and appreciation.
I want to let myself rest when I need to and feel okay about living life in the slow lane. Who wants to be in the fast lane anyway? You get a much better view of the world when you slow things down!
I forget the carefree, fun loving person that I used to be sometimes, It’s almost as if I see her as a completely different person. Different to the one that looks back at me in the mirror. I need to remember that I am still her. My life isn’t over, its just different now.
I have been so focused on finding someone to fix me and someone to take all of this away. It’s hard not to when you suffer a life bomb and when you didn’t see it coming. Its natural to want answers and someone to fix things. Constant thoughts of if only there was a magic pill, a magic operation…. if only, if only, if only. These types of thoughts aren’t helpful. They stop you living in the present. Thinking this way means you are forever future tripping at what could be. These type of thoughts prevent you from loving and appreciating who you are today.
I need to accept there isn’t a magic fix and it’s not likely that there will ever be. I need to live day by day and take one step at a time. Some days are good, some days are truly awful. I just have to role with the punches and live the good days to the full.
This wasn’t how I wanted things to be. I don’t really want to live my life like this but tough! We don’t get to choose. I can’t keep putting my life on hold until I am fixed. Hiding away because I am angry at what’s happened. The only person I’m punishing is myself and I’ve done nothing wrong!
Nobody asks to be sick or in pain, none of us know when it’s coming if at all. I need to accept what’s happened has happened and see before and past it.
This word reminds me of my Mum.
She’s always saying what will be, will be and to just let it flow and relax. She’s such a calm person and she has such a positive influence on my life.
I am a Virgo and a natural perfectionist, worrier and stress head. Sometimes I let things get on top of me. I get myself into a whirlwind of fighting against the clock and worrying about never having enough time.
When I’m in the whirlwind it feels like I’m faced with mountains. I try to climb them but I only ever make it half way up. Every day the time feels like it runs out before I’m ready. This then can make me feel like a failure and it’s a horrible way to feel.
Keeping a note of what I’ve achieved in a day will help me see how much I’ve achieved. This is far better than focusing on what I haven’t. This is a great way of acknowledging how well you have done.
It’s natural to always wish we could do more or be better at something, everyone does it. Let’s flip that on its head! We need to recognise more about what we’ve done and just how awesome we are for achieving it!
It’s so important for self esteem and positivity to congratulate and acknowledge strength rather than focusing on weakness.
I am going to start focusing more on letting it flow and allowing what will be to be.
I have nothing to prove, I’m not in a race and what doesn’t happen today can happen tomorrow. All that’s important is that I have the strength to get through each day. There’s absolutely no point in burning myself out.
Today’s overdoing it will almost certainly be tomorrow’s write off. It is time to let go, go with the flow and chill out!!
Thank you so much Sheryl for providing a chance to link up with a community of strength and support.