I’m Leah from www.justmeleah.co.uk and I’ve got Fibromyalgia and ME. I’ve had it since 2007 and sadly, they’re both progressive conditions so my mobility has got worse year on year. Before I was ill I had idea how much damage chronic illnesses do to the body. Since 2007 my life has changed in every respect – I used to be a work hard, play harder girl with an incredibly stressful job and a busy social life. I used to walk 25-35 miles a week and loved going out dancing. Now I’m a stay-at-home blogger but I’m still really happy to be alive. Being diagnosed with a chronic illness is usually a long process, and it can affect your mental health as well as your physical health. As you battle to cope with your new reality, you learn a lot about yourself and other people. It can be really scary (terrifying even!) but I’ve come through the other side and now live well with my illnesses.
They do dictate everything though – from what shampoo I can use on my sensitive scalp, to what shoes I can wear on my injury-prone feet. I’m prone to frequent infections due to ME – conjunctivitis, urinary tract infections, throat infections, chest infections. My favourite clothes are pull on/slip off ones as I can’t deal with buttons or zips and I also need to get my clothes off quickly to run to the loo! I have frequent dizzy spells, and I’m sensitive to bright lights, strong smells, loud noises and movement. I used to love going to gigs but they’re a nightmare for me now. My two biggest symptoms are pain and fatigue, but those two words don’t explain what it’s really like. There are so many different kinds of pain, and people who are totally physically well have a limited frame of reference with which to understand pain. They may have sprained joints in the past, had stomach aches and headaches and the flu, but when you tell them what you experience is ALL of that at once every day and far, far more they start to get the picture. When you ask someone if they’ve ever passed out through sheer fatigue they realise you don’t mean you’re a bit tired and need a sleep. People with Fibro and ME never feel better after sleep. You feel like this for life. You have to break down your struggle to the bare bones of it for physically well people to get it, but once they have your back it’s magical!
Putting on my bra hurts. Washing my hair over the bath hurts. Bending over to tie my shoes hurts. Turning over in bed hurts. Walking hurts, my bones hurt, my joints hurt, my skin hurts. Everything hurts, and at the beginning of my journey into chronic illness I knew I had a choice – I could try to maintain some semblance of a ‘normal’ life and be in agony every day, or make my life ‘smaller’ in accordance with my new limits. It took a few years of utter pigheadedness for me to realise I actually WASN’T invincible any more, but once I did I adjusted really well. 🙂 Having chronic illness isn’t all bad by any means – I’ve learned so much about what really matters. Family, good friends and my husband have all helped me so much in my journey, and fair-weather friends fell away leaving me with just amazing people in my life. I appreciate the little things so much more – a sunset, a drive in the countryside, and my online connections with my friends. And since I’ve been chronically ill I’ve made SO MANY friends who also have invisible illnesses or chronic illnesses, and it’s made me so much more aware that strangers can be going through such a battle and you may never know about it. It has made me a kinder human. Find me on my blog or @justmeleah_blog on Twitter.
Let’s see what my fellow Spoonies have learned from having chronic illness, shall we?
Charli Russon – www.CurvyGirlThin.com
I’ve been ill of my life so I’ve learnt many things along the way but I think the biggest has been personal and that is how to pace myself. As I work full time, walk the dog, swim, and blog – I have a pretty hectic lifestyle so learning to say no has been a big part in not burning myself out. Unfortunately, this also means that I lose a lot of friends – unless you suffer from a chronic illness you’ll never know how exhausting leading a seemingly normal life is and that makes it difficult for people to understand why I can’t go to the cinema on a weeknight or why I can’t go for drinks every Friday. People don’t understand why I can be happy and buoyant on a Friday at work and too exhausted to continue with the planned shopping trip on a Saturday – or why I can’t head out for a mammoth walk the day after a night out dancing. The amount of times I have to cancel on people means that some have stopped inviting me altogether. There are only a select few who understand and invite me regardless!
Tania Jayne – http://whentaniatalks.com
I think the biggest thing that I’ve learnt since having chronic pain is that people don’t want to help you unless they can see there is something wrong. This became very apparent when I started using crutches. When I asked for a seat on public transport, people got up! This amazed me. The first time I’d asked for a seat was on a train. I asked two Venture Scouts who were sitting in the priority seats if I could sit down. They ignored me. I asked again. They both looked at me as though I were speaking a different language, didn’t say anything & didn’t move. So I had to sit on the floor of the train for 2 hours, with people whispering “she says she’s entitled to sit there” but no one moving to let me sit down. It was a horrible experience & I expected more from a group of Scouts. Especially as the leader, who also turned out to be the mother of one of the boys was sitting opposite them! If I’d have stood on the train, I would have risked a hip subluxation (partial dislocation). Sitting on the train floor, resulted in severe back pain & meant that I had to cut my trip to London short & return home, where I spent the next day in bed because the pain was so severe that I could barely move. As a result, if my condition improves, I can see myself taking at least one of my crutches out with me to make my invisible illness visible so that I’m not judged & refused help when I ask for it. This has been suggested by a member of my medical team.
Georgina Grogan – www.shemightbeloved.com
Because nobody can actually see the pain that I am enduring, everyone just thinks I’m fat and lazy, and they don’t have a problem with telling me. ‘B is only one floor up, you could take the stairs,’ a nurse said to me in a hospital after an appointment over my chronic pain. I explained to her that taking the stairs would leave me unable to walk for the rest of the day, she shut up. It’s comments like these that make me so angry. Everyone assumes that you should just be able to take the stairs, lift the heavy parcel out of their hands. I’ve learnt that the world is really fucking ignorant unless they’ve experienced it themselves. Before suffering myself I was ignorant to invisible illnesses and pains, but I would have never implied that someone should take the stairs, or lifted the parcel themselves. If I was abled, I would keep my mouth shut and help where I could. It’s one thing to not understand chronic pain, but it’s another to open your mouth and judge someone you know nothing about.
Donna Grant- www.februarystars.co.uk
Having an invisible illness can be a real struggle at times. One thing I have learned is that you don’t truly “get it” until you get it. Until you have walked in my shoes you have no idea what it feels like and how difficult I find things. We are all individual and even those who share the same illness are affected differently. Just because someone is capable of achieving something, it doesn’t mean someone else is. And what works for one, won’t necessarily work for another.
For the most part, I have learned that suggestions of “have you tried…” are generally ill informed and unhelpful. Yet many people feel obliged to tell me what they think I should do to help myself (that they’ve typically learned from google). This is not only frustrating but it can make me feel like I am not trying hard enough, when the truth is I am doing my damn hardest to improve my health and to feel better. I don’t appreciate being made to feel like a failure or like I am still sick because I am not doing x, y or z. Judgement should be replaced with empathy, compassion and understanding.
Diana – fatfemmefabulous.com
1) I CANNOT IGNORE THE PAIN
This one is key. Every single time I take on an attitude of leading the same life any other woman in her early 30’s, my condition knocks me down and reminds me I am not in charge. It is.
2) I MUST RESPECT MY OWN LIMITS
Leading on from not ignoring the pain, it goes hand in hand with finding out what I can do. If I ignore the pain and push on regardless I don’t begin the next day set back to (my own version of neutral) the same way going out on a Sunday drinking when you have work on a Monday results in a hangover, I get my own pain hangover.
3) A TYPICAL BLOGGERS DAY IS NOT MY DAY
Call it spoons, call it water in a glass, call it what you want: I have limited reserves which differ from a person without these conditions. I wake up in pain, despite having slept with heated wheat bags under me and medicated. The climb up the stairs to the bathroom is hard, the pain dull and achey. My head is foggy as I slept badly because I was in pain. Pain, pain, always in pain.
4) PICTURES MUST BE TAKEN WITH SPEED / THERE CANNOT BE MULTIPLE OUTFITS
It’s great to plan a shoot and arrange various outfits. Spend a few hours for weeks of content. If you are in pain? Nope. By the time hair and make-up is done I am exhausted.
5) PEOPLE WITHOUT PAIN DO NOT GET IT
The nicest of people understand more than others but friends, other bloggers and brands want someone who is committed and dependable. Many people with chronic pain live day-to-day as the smallest imbalance causes huge repercussions. My uber was later than estimated = I stood longer than I can and now the pain is bad enough that going out becomes impossible.
6) IT DOESN’T ALWAYS GET BETTER*
I would love to tell you things will improve. I would love to tell me! That isn’t always the case. *What can change is learning your limits and working within them. The friends and connections who do stick around are worth gold and to be cherished. Working within your limits and creating content you are proud of is indescribable on how wonderful it makes you feel; whether you have a following of 1 or 10,000.
So as you see, life can be hard for people with chronic pain. When we share what we’re going through, it’s not always a ‘Woe is me!’, it’s to make other people who are also suffering feel less alone. Let’s take a line from the Jerry Springer show “Be kind to yourself, and each other.”
*Illustrations by http://murderofgoths.co.uk/.*