Friday, 4 March 2016

Walk in my Fibromyalgia shoes if you want to?



Lately, I am thankful for my thick skin as people can be so insensitive and not even realise. If I am to do this subject any justice I can not insinuate that this is isolated to strangers, loved ones and family can be equal as harsh, all be it with a loving smile.

People open their mouth and seem to speak before they think of how the words will affect us. This leads then to my writing this piece and offering people to walk in my shoes. You claim to understand how I feel, you know all about my illness and even put your own spin on it. You know what medicines are best, you have a friend who has the same illness and you read about it in a magazine once. I am sure it will be easy for you based on your expertise.

Here are my shoes, (holds up a scruffy well-worn pair of slippers) well slippers really as chronic illness means I am at home 99.9% of the time. Battered old slippers that are so warm.  I can no longer wear beautiful heels as they are so painful to walk in when walking is so difficult anyway. Get accustomed to flat shoes as bending to tie shoes is also painful. The longing for patent leather stilettos has never left me. So you often stare at women who wear pretty heels in envy.

No longer is "Save for black patent leather Louboutins" on my bucket list.

Take my medications. Luckily for me, I do not have any side effects but many of my chronic illness community do, you may not be as lucky as me. Check out the list of side effects some feel zombified, nausea, palpitations, dizziness or gaining many extra kilograms.

You will detest having a bath, as the getting in and out is painful. The whole act of having a bath is draining but standing in a shower is no joy either. Most times after a bath you are so exhausted you just want to sleep again.

Clothes are never the same, they hurt, scratch, restrict. Wear something comfortable. Pyjamas are best really, we spend our lives in pyjamas.

Forget about the pretty lace bras in your underwear draw, they are like a tourniquet now across your chest. Also, opt for wider gusset knickers as a string of lace grating on your undercarriage when already in pain is not wise. 

Learn to convince yourself you are independent yet you are not you are very much dependent on your loved ones.

Coming to terms with needing an aid to walking, this is a big one so be prepared for every emotion. It helps your legs but makes shoulders, your hand, and your arms ache, but you need it.

You will enjoy nighttime a little more as during the day you feel tremendous guilt for all the things you should be doing by can not. Nighttime is a time when most people relax so the guilt eases.

If you were once a winter lover, you are now a summer lover. I won't explain this one in detail, a surge of pain and increase in symptoms speaks better.

You will definitely need a hot water bottle (or two) as we always have one stuck to us somewhere. Make sure someone is home as having the ability to unscrew the knob is now a challenge, you may end up scalding yourself also once filled as the pincer grip on a painful hand is difficult.
Balancing a hot water bottle on legs is a challenge so you need a heat blanket for your legs.

You will never be able to decide if the upper back is more in need of lower back so have one on each.

Pampering can often take a back seat as you simply have no energy. One of the most painful things is washing your hair as raising your hands to head height is nasty. This then has an impact on your overall opinion of your hair. I had all mine cut off. It's ok really, see above section stating 99.9% of the time you are at home. 



Pick a nice photo of a good day as your profile picture on social media. It helps the "You don't look ill" people to have a purpose in life. They believe you look like your profile picture daily. They are a needy bunch that needs this belief. (Bless.)

You will possibly want to fight this illness and the symptoms at first. Try and skip that part and accept it, much easier. 

Learn to say "Thank you" when people tell you to "Get well soon" it is easier than to have to explain, that this is it and you don't get better, the key is the word "Chronic" in Chronic illness.

Often the pain makes you grind your teeth this can cause your teeth to fall out so learn to suck puree. You will also get a severe migraine as a result.

Second thoughts learn to just smile at most comments as some people with an opinion on your illness chat utter ........... (Insert swear word)

Identify what a flare feels like prior to one, it then will not seem like you are dying.


You will get annoyed by drivers that selfishly park on pavement or workmen that leave their belongings behind. Bin day is also fun, think of it as a free lesson in dribbling a ball with cones, yet you have no football...and it is annoying.


Do you currently have lots of friends? You will lose them, well most of them. Don't worry you get over it. They simply get bored of inviting you out as you never go.

Wheelchairs and mobility scooters do not like harsh weather yet this is the time when you ache more and mobility is difficult. 

I have no sense of smell, I lost it when I got Fibromyalgia so forget fresh coffee and delicious baked bread. 

Grab a little area next to your seat to put all your belongings. Belongings/medication needs to be within arms reach.


Find a hobby as you are at home mostly. I enjoy knitting, I can not knit for long and the pain in my hand decides the period so even though you have a hobby, pain/fibro fog/chronic fatigue/attention span controls it not you.

Vitamin D deficiency is such a joy, aching muscles and lower back pain. Enjoy.

Comforting songs help when you are ill. I particularly like Sheldon (The Big Bang Theory) singing Soft kitty.

Have I mentioned unrefreshed sleep, insomnia, spending days just wanting to sleep and yet still feeling tired? I have loads more to share yet so don't worry I am sure I will cover it soon.

What? Already?

Have you had too much?

Yes, you can use your get out card, hand the slippers back and no longer walk in my shoes. Sadly we can not, this is life now for us.  Many of us still have a magical wonderful life, it is just different from the old one. We appreciate our better days so much. A cup of tea in a nice cup can be a reason to make life worthwhile.

All we ask is you think before you have an opinion on us.

We really are doing our best and disproving the theory of "You can not polish a turd" and "You can not make a silk purse out of a sows ear" Yes you can, we do it daily with a smile.

  Love and gentle hugs to you all

Find me also on

Also as admin for the group  WOMEN WITH FIBROMYALGIA


14 comments:

  1. I relate to every one of these!

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    1. Hello hunny, It is horrible that you relate yet comforting to know I am not alone. Huge hugs xxx

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    1. Hi Cath, thank you so much for commenting. Huge hug Ness xxxx

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    2. Did they really put 'Mr' on your script bottle? Just spotted that.

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    3. Ha ha Yes! never noticed that, naughty pharmacy that is wrong xx

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  3. Yep.M & S knickers are the best. Vitamin D deficiency have that. Hate Summer though. I am much worse in Summer and recover a little in Winter. Not this Winter though as it's been too warm.

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    1. Hello Organised Pauper, sorry you have vit D deficiency like me. It is such a nasty condition that sounds so trivial but gives so many symptoms. Huge hugs love Ness xx

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  4. Ness, Couldnt Agree More with This Piece. I Havent Got What You Have Got, But I Do Look After My Other Half Who Has Arthritus In Both Hips, And Uses A Mobility Scooter And Walking Stick. People Look At Her And Think Because She Uses It, She Is Lazy. This IS Far From The Truth As She Is In Constant Pain And Is On A Lot Of Medication To Help Her. People Make Judgements Without Realising The Full Story Of What Is Up With The Prson. Keep Writing Your Blog, And Hopefully People Will Finally Understand What A Chronic Illness Is. Apologies For The Essay :)

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    1. Hi, you sound like such a supportive partner it is so lovely to read. It really makes me sad when partners don't understand so how lovely that your lady has you. Thank you so much for commenting, it means so much to think people without chronic illness read it also and "get" what I am saying. Love and hugs to you and your partner Ness xxx

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  5. Would you believe that when I told my mother-in-law last week that I've got to have a biopsy for possible skin cancer that she told me I should be used to being ill by now as I've got everything! Even the C word didn't work. Maybe I'll use the other C word! I need a thicker skin and armour.

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    1. Oh the wonder of the Mother in law baffles me. Hope you are ok. Have you had the biopsy results back yet? I had this a while back and had it removed. If you need a chat pop on messenger hunny Love Ness xxx

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  6. I've felt alone in this for so long. Now I'm crying (in bed, next to my meds, knitting in reach) because I've never met someone who fully understands. You've made me feel sane for the first time in years.

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    1. Oh this is so beautiful and what I started my blog for. I too felt so alone, alien and isolated at first so I fully understand. Massive hugs and no you are definitely not alone, I am always here if you need me. Love and hugs Ness xxx

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