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Fibromyalgia, like some other debilitating chronic and mental illnesses are relatively "unseen." Generally it is described as a neurosensory disorder characterised by widespread muscle pain, stiff joints and fatigue, although the symptoms are many and varied. There is no specific blood test available to confirm fibromyalgia, rather, a heap of tests to rule out other health conditions which has a lot of sceptics believing if the condition is actually real.
When I was diagnosed in November 2015 by a rheumatologist, I was told that this was my sentence and I had to accept it along with the anti depressants and anxiety medication. I walked out the clinic and cried for hours. I then spent the next few days researching everything I could on the illness and joining support groups only to disconnect from them because the stories in them made me fearful of where i could progress to.
Many patients were in wheelchairs by the time they were in their forties, taking a cocktail of pain killers and anti depressants, relaxants and vitamin supplements. Most of them knew more than their doctors and were called liars, attention seekers and that their symptoms were "all in their head" or they just needed to "take this pill" or "lose weight" and they would get better.
Several times group members would be calling police to do welfare checks on other members who had gone off the grid of contact and was very likely at the point of suicide. The feelings of hopelessness and thoughts of suicide are very real for some people with chronic illness.
I have spent years with unexplained aches and pains. As far back as I can remember to childhood, I had pain which became more aggravated as I got older.
Back pain that had me in physio office at the age of twelve with a diagnosis of scoliosis and pushing myself too hard in my dance classes. As I hit puberty the pain would radiate through my legs every menstrual cycle and now I live with it all over my body on a daily basis. I also suffered anxiety pretty much all my life and reacted badly to stressful situations and would sink into big depressions.
My symptoms dramatically progressed when I had family issues and I was also pregnant. The pain and fatigue with pregnancy was beyond bad.
In my second pregnancy I was literally begging my obstetrician to induce me or do a c section to get the baby out early and relieve me of my agony. She downplayed my pain and told me I was being dramatic and she had another patient using a walking frame who wasn't complaining and crying in her office like me.
My chiropractor ( I was still undiagnosed) was a true gift, giving me two sessions of a week and one without charge because of the distress my body was in.
His skills were literally the only thing that was helping my body stay together in those last eight weeks. He also wrote to my ob to give me some support in getting my pain level across but I was treated like I was crazy and she was insulted I would get a chiro to " tell her how to do her job." I switched obs about six weeks out from delivery.
Even now, family members forget or are ignorant to the symptoms i suffer. If i turn up to a family dinner and I'm tired and unsociable they say things like " I don't understand why you can go to the gym and lift weights but lugging around a few chairs or standing to peel potatoes is so hard for you." or "Don't stay up so late and you won't be tired."
I stay up late because I can't sleep and then get dragged out of sleep like a zombie when i finally do and I never feel refreshed-ever. As for the lifting weights vs peeling potatoes, I can't explain it, sometimes thats just how it is.
Certain movements and positions make it worse. I rarely sit at a table these days because within 15 minutes my whole body feels like its on fire. I spend most of my evenings eating dinner in a recliner. Met moment where i got a reality check of my limitations was when my son got stuck in a Hungry Jacks slide and I physically couldn't crawl faster than an eighty year old through the slide to get him. My body wouldn't go where my mind wanted it to.
Most of the time, people wouldn't even be aware I had a chronic illness. For quite a while I ran a business, studied, blogged on the side and raised two kids, went to gym daily and managed the home. I didn't want to be my illness but then there were days i would just crash, like after I tried to clean the whole house by myself and cook a roast or organise one of the kids birthday parties and I would just totally burn out for a few days barely able to get out of bed.
Thats just it, some days are good, some days are bad. Some days we try to be the warriors who can do it all and other days we fall in a heap. Most people don't notice though, they take your lack of contact as part of your introverted nature or that fact you must be busy.
Often I will flake on arrangements I've made because the effort require for me to go out is just totally overwhelming. I avoid cinemas and dinners in restaurants because sitting for long periods is painful. I get social anxiety, my mood goes up and down and I can go from bouncing off the walls to literally not wanting to move in the space of a few hours.
I wear sunglasses all the time. If I take them off I am suddenly attacked with hay fever like symptoms and hellish light sensitivity. I have sensory overload. I would be left with horrendous anxiety when my partner would have youtube going on his phone and the tv going. The sounds together would send me into an absolute panic as would the kids constantly needing to be in my face or on me or screaming at each other. I basically went into some sort of sensory meltdown.
These are just scratching the surface on some of my symptoms. Others symptoms will include some of these and add a whole heap more to the list. I personally have learned to manage my condition with paleo lifestyle and more recently I trialled a week of vegan that definitely improved some of my symptoms such as light sensitivity. Despite that, it is important to understand that there is NO CURE.
Things you can do to help someone with fibromyalgia:
1. Don't become their medical expert.
Chances are they have already researched it or tried it. Perhaps are even on it. Feel free to occasionally put an article in front of them to read at their own leisure but don't push it. Facing a diagnosis can be extremely difficult particularly when there is no true "test" or "cure." Also make sure you understand it. Don't just read the wikipedia definition and consider yourself an expert. Fibromyalgia and its symptoms are very complex and affect each person differently.
2. Don't downplay their pain or fatigue.
The amount of times I have been open about the pain I'm in or how tired I am, only to hear someone reply with "Oh yeah I'm so tired too its been a huge week.Just get a sleep in and you'll feel better" makes me want to hit them in the face. One quote floating around the internet says, " To understand what chronic fatigue feels like,( a symptom of fibro) a person would have to stay up for three days straight and then be expected to function like a normal person"
3. Try to have empathy when they cancel plans or leave early.
It's not personal. In fact if they have shown up at all you are probably super important to them. Please remember they are trying.
4. Know that they are grateful for your support.
Friends of chronic illness suffers can feel helpless and like they are constantly stepping on toes.Understanding what a chronic illness sufferer is dealing with is very difficult if you have not experienced it for yourself. Sometimes the best thing you can do is just listen, give gentle hugs and take the pressure off.
5. If you are mad at them for not coping, being "lazy" or flaking, try to imagine how mad they are at themselves."
That is, if they aren't too exhausted to think about it. People with chronic illness are always beating themselves up about the people they are letting down. Not being a good friend, a patient happy parent, a helpful or regular visitor to their grandparents. It's heartbreaking for them too. They are mad about the small stuff too, forgetting birthdays or appointments or whether they packed lunch for the kids.
6. Help them with organisation or physically taxing tasks.
Send them reminder texts the day before and on the day for anything important they have to remember. Set calendar alerts in their phone, assist them with some sort of loose routine. Assist with commutes for children to and from school or getting groceries. If the budget is there, organise for someone to mow their lawns or get a cleaner in to do a deeper clean once a fortnight or month for a few hours. Just always do with their permission, don't take over as you can make them feel even more useless than they already do.
7. Don't always believe they are ok.
Chronic illness sufferers have a way of being experts at being strong and hiding their feelings and their illness. If they haven't called, make the effort to call or text and let them know you are thinking of them. Send them small care packages to take away their feelings of isolation. Book them in for some pampering or suggest a meal together in the comfort of home, (yours if they may have to go to effort to clean up and be embarrassed about having guests. )
8. Give them credit for what they do do.
Partners can easily fall into the trap of pointing out all the things that didn't get done. Instead of picking on whats not done and when its going to get done, either accept today was just not their productive day or acknowledge the things they attempted.
One of the most amazing things my amazing Dr once said to me was that I did enough to make the average person tired let alone someone with my condition and raising kids. Another friend mentioned something similar and said it pretty much made me superwoman in her eyes. At the time I felt like I was falling apart and to have them point out the progress I was making made a huge difference in helping me persevere.
There are over 200 symptoms related to fibromyalgia. They can include but not be limited to:
Lastly, everyone is fighting a battle you know nothing about. Be kind, always.