Learning every day

I’ve learned a lot on the past few years about having a chronic illness. Well you would, wouldn’t you, if you had been diagnosed with a life-changing illness? And I mean life-changing. A lot of people don’t realise what I have t put myself through to complete the day-to-day tasks of being me.

People can be unsympathetic 

This is probably worst but about a chronic illness. Because it’s not always visible it’s not always seen as the debilitating issue it can be and often is. If I have my walking cane because my legs have turned to jelly and walking is hard or if I have my wrist strapped up because it hurts then people notice and are more likely to be kind. But if I’m suffering a migraine or my all too familiar abdominal pains then, even if it’s showing in my face, I don’t always have kind responses. I’m not talking friends here. People who know me and have worked closely with me or spent a decent amount of time with me have seen the many facets of my life and are (more often than not) sympathetic. In fact I’ve met some people who push me towards looking after myself and take care of me. But these are the people who are sympathetic even if they can’t be empathetic. Those who are scathing of my condition or how much it affects my life are those who know little or nothing about me. Or, quite frankly, those I don’t want to let in because they come with that attitude. I’ve learned who is a positive influence and who gives me positive energy in my life. I could spend my energy trying to educate the world what it’s like having a chronic illness or three but it’s a bit like politics - some people are open and willing to listen, others are closed off and can’t listen because their opinion is the only one and the right one. It’s a shame. I’d like to educate everyone but my limited energy is needed elsewhere. So I’m asking you, dear reader, if you will help me do this. I have had my mind changed on many a topic over the years and am happy to see another side. I’d like to pass that on. Just because someone with a chronic illness smiles, or can enjoy a night out or a day with their family, or can actually achieve things, because they can hold down a job, or be involved in a play doesn’t mean they’re not sick. We are never NOT sick. It is an unfortunate, frustrating, limiting and (if I’m honest) boring truth. We don’t want to get up and take meds first thing in the day but we do. We do so we can go to work, look after our children and actually live our lives. It doesn’t mean this doesn’t cost us. Some days getting out of bed isn’t an option. Others we feel ok. Some days we have to rest because for the two days before hand we’ve been busy. Some days our bodies get sick to remind us to rest. We wish we were making it up. We wish we could jump out of bed and get on with our day full of energy and vigour. We wish we weren’t sick.

Drs don’t always know their stuff 

This is one of the most frustrating things about chronic illness. Every Dr has different opinions and not all agree with each other. Also, more research is done on conditions such as endometriosis and fibromyalgia every day so they would need to be bang up to date. Add to this that not every specialist is a specialist in that specific field. For example I’ve seen at least ten gynaecologists over the years and only one diagnosed me but she was an unsympathetic bitch. Others have been kind, gentle and understanding even, but most (unfortunately) have not understood the level of pain I’ve been in to the extent I’ve cried in their office or all the way home. I’ve wanted to scream at them “If you were kicked in the balls 20 times a day then you might understand what I go through, you condescending bastard.” Often I’m treated like a child and as if I don’t know my own body. They have said things like “the pain can’t be that bad.” Or “maybe we should try birth control again” Or “well it’s only mild...”

I want to respond “Actually the pain is that bad that most days I struggle to move until the painkillers kick in. I’ve tried the majority or birth controls and they either make my pain worse or they mess with my head and I struggle to keep my depression at bay, so no thank you. And it may have been diagnosed as mild, doc, but if you refer to this website and this and this,  I think you’ll find that the level of endometriosis isn’t related to the level of pain a human being is. Please don’t condescend and patronise me. I’ve been living with this 20 years now and just because I’ve been lucky enough to bare children doesn’t mean I’m not in an excruciating amount of pain every day.” But do I ever say this? No. I just leave, head hung low as if I’ve been dismissed from the headmasters office. I swear and shout to my husband who wonders why the medical professionals I’ve seen have constantly let me down. I obviously haven’t found the right one yet so I will keep looking. There must be one out there who can help me, who won’t condescend, who I won’t want to call names and swear at.

You often feel isolated

This is an unfortunate truth. I’m surrounded by family and friends and even being thousands of miles from home I have support. But sometimes I feel alone and lonely. When I’m curdled up on a bad day and I’m on my own I miss my dog for company. When I can’t move and I miss out on seeing the kids or my husband... When life throws me a lemon or twelve and I don’t have the energy to make lemonade... I make an effort to get out because it helps my mental state. It always costs me though. Even meeting a friend for coffee means I need a nap in the afternoon. Now imagine what it’s like to attend a days work or a twelve hour rehearsal. I’m still recovering from my last rehearsal on Sunday and it’s Thursday. I pay for my art and the things I love, but doing them keeps me sane. I don’t mind paying when I can give myself the time I need to rest. I just need to get good at the resting part. I’ve decided to get back into walking because it’s easier than a lot of activities on my body. Plus I can do it alone or with others and I can sit down when I need to. It gets me out of the house.

And this is me. I push myself to get out because I’m motivated by friends, family and activities I love. Now imagine how lonely and isolated someone can feel when they don’t have family and friends around them, when they can’t leave the house, when they see no one for days on end, when they can’t find the strength of heart or mind to push through the pain and just leave the house.

Simple things make it worse 

This is very true. A cold can set you back. I have a cold and it’s making me shake like I have a fever or am cold or I need to eat. I don’t. It’s just my muscles reacting. My sister believes I have fibromyalgia as well as endometriosis and adenomyosis. This means I am complicated and identifying where my symptoms stem from can be tricky. But she sent me this link where another fibromyalgia sufferer put eloquently into words how much more troubling a simple cough can be when you have a chronic illness. Have a look: the mighty I can eat wheat or dairy and it’s worse. I can drink alcohol and it’s worse. I can have little or interrupted sleep and it’s worse. I can have a busy day or week and it’s worse. I can have a cold and it’s worse. You get the idea. 

People are there to help you just have to look 

The important thing is to find those who can and will support you. I am lucky, I have. I have found a support network in Japan quite quickly and one reason is talking about my illness. Before I kept it hidden but I have found that being open and honest separates the wheat from the chaff. Plus people appreciate knowing in advance The important when planning something like a play. Not all my current friends understand but then I have to understand what they are going through and the lives they are living too. Hopefully you can find something to relate to here, something to help you understand a little more of me.

I shall leave you with the lovely words of one of my friends here in Japan.

“ Becky this body of yours doesn’t deserve the amazingness that is you 😣. Or more appropriately you don’t deserve all the pain this body of yours is putting you through.  Let’s not blame your darling body too much, it’s not like it chose all of this!  If only the world would stop investing in medication and research for 80 year old men to have giant long lasting boners and start spending it on women’s health, you may have half a chance at a less painful second  half of life.  🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️” Amem to that!

It’s friends like these that make me smile. Cheers.