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.
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.
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.
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.
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.
ಌ Love and gentle hugs to you all