Fibromyalgia, Chronic Fatigue & Migraines –
One of the hardest things about having an invisible illness is other peoples misperceptions about your life.
But then again we do seem to have these about each other whatever our circumstances, especially when hearing things from other friends or seeing things posted on Facebook.
My hardest hurdle has been people close to me feeling let down.
They don’t realise or can’t accept I’m doing my best when I constantly don’t show up.
It seems that when you keep saying no to social events, people just stop inviting you. And that is fair enough. But it hurts.
The other side to that is people who keep making the effort to invite you feel let down over and over. Without realizing that trying to get to something invited to, is such a huge huge arduous task.
For example:
I get invited to a day function for a friends kids. I desperately want to go so I try to rest the whole day before and not commit to anything else (not that I commit to much at all these days). I still have to work as that is my livelihood and I have no one else to rely on but myself. I feel drained and in a lot of pain despite trying to take it easy. I try to sleep. The next morning wakeup is like Russian roulette. Do I feel good, or don’t I? It can go either way.
I wakeup and I don’t feel too good. So I rest and take it easy so that I can still make it. I stay in bed, I do minimal work (I work from home luckily enough but still have a lot of ground to cover and ultimate responsibility as its my own business) The event is at 2pm and by 12 noon I have managed to do … nothing.
I roll out of bed, I have a shower as I desperately want to get to the event. I get dressed, slowly and painfully. Then I slump on the bed and lay down. It is obvious I’m not going to make it. I send the painful, expected text message that I won’t be coming. I don’t call because I know how busy and excited they are bringing their event to life… just like I used to do in what seems another life time ago.
I manage to eat something easy out of the fridge and I go back to bed guilt-ridden. I get a headache bordering on migraine, take some medication and try to sleep.
I get up at 5pm I feel much better now the meds have kicked in and I work for 4 hours straight trying to catch up on a days worth of work.
During this time I’m watching the amazing sunset over the top of my computer and snap a gorgeous photo or two. I post it on Facebook with a positive happy quip about life (because lets face it no one wants to hear whingeing) and all the external people in my life think everything’s fine with me. Including the friend who’s party I didn’t go to.
Fibro : 1
Being a good friend : 0
The next day I miraculously wake up feeling good.
I work solidly from 9am – 11am I grab a bite and take my meds.
I then work 11:30 – 3 trying to catch up on the work I can’t do on the days I’m unwell. Then I quickly run down to the shops to fill up the cupboards that are almost empty as I haven’t had the energy to shop.
If I have made my bed (something I used to do religiously everyday) then today is a good day. Today I have made my bed.
By 4pm I am miraculously still feeling good. Some friends had asked me weeks ago to catchup for an early dinner and I think I’ll be able to make it woohoo. I look at the amazing day outside and so wish to go for a walk. But it’s a decision. Do I take a 15 minute walk and hope I don’t get the pain searing up my back leading to instant migraine and risk not being able to go? Or do I just have a shower and wash my hair and try to look like I haven’t been in bed for the most part of 3 days straight? I hop in the shower.
I get to dinner, thankfully it’s just around the corner with not far to drive. If I’m feeling really good I’ll have a wine, but this rarely happens. We take some selfies and check in on FB while I’m feeling fresh and normal. 1 hour later everything is aching, the noise and all the people and concentrating on conversation etc is all too much. My friends look at me and ask if I’m ok because unbeknownst to me the colour has started draining from my face and I look really tired. I take some mild pain killers so I can still drive then get through the next hour then drive home and collapse.
Fibro : 1
Being a good Friend : 1
The chance my other friend sees my posts and thinks I make the effort for others and not them = Fibro : 2
My wish that my friends could come and visit me at home is so huge. But that rarely happens. They have kids. They work. They have partners. They have family. Their kids have to be home in bed and their day is segmented into a hundred different tasks and if I fit great. If I don’t then I don’t. I rarely do.
I have a business to run and massive limitations with my health.
I have to go with the flow. I don’t make appointments and if I do I often have to change them be it medical appointment, skype meetings, WIP meetings with my employees or meetups with friends.
So often our schedules just don’t meet.
So I stay in touch on FB and remain upbeat.
I post about the good things because that’s what I want to focus on in my life.
I send gifts for milestones instead of showing up.
And I suffer in silence through the bad times, which is unfortunately the majority of the time.
I’ve forgotten what joy is. Now life is about duty. So I desperately try to find joy in the small things and I do. It stops me from becoming depressed and unable to carry out what others consider the mundane things in life.
I don’t have much support. A few messages from friends and family. Understanding and huge amount of patience from some of them. I get very few visitors and can’t accept many anyway. I spend so much time trying to make myself look and feel like a happy, valuable part of humanity making the best of life.
This is much harder for me than most people.
My energy level is about 20% of yours on a good day and literally 5% on a bad day. On those days I don’t even shower.
I don’t have the energy to exercise and I put on weight.
I eat high energy foods because I am so so tired and often nauseous and that gets me through, but I put on weight.
My joy in life has been replaced by guilt.
Guilt that I can’t live in Bali (where my business is) because it’s too hot and drains every morsel of energy rendering me useless to work.
Guilt that I don’t see my fur babies because they live in Bali.
Guilt that when I am in Bali I rarely have the energy to go into my business!!!
Guilt that I never see my friends.
Guilt that I never show up.
Guilt that I have lost so many friends because I can’t show up.
Guilt that I can’t exercise.
I still try so hard to eat right but on those bad days when I only eat cereal and fruit and chocolate and whatever I can grab easily, I feel guilt that I haven’t juiced and cooked from scratch.
Guilt that 80% of my life is spent working (from the couch or bed)
Guilt that the other 20% is doing basic things like food shopping and showering and cleaning up which leaves -1% for enjoyment and catching up with loved ones.
Guilt that other people perceive me as selfish.
Selfish.
And in that knowledge I cry.
I cry heartfelt sobs.
I just want my old life back.
I want to connect.
I want to have some enjoyment.
I want to come over to your house and hang out.
I want to bounce off the walls and be able to do task after task after task.
But I can’t.
And right now I’m just thankful that I have some energy to run my business. That my brain has enabled me to function on a really high level to get things done quickly and efficiently. That my pain threshold is so high I can manage on less meds than most in my predicament. And that I know enough about health and food to make good choices most of the time.
So please don’t judge me or anybody else with invisible illnesses.
Life is not as it seems.
We need support not judgement.
And we almost never ask for help as we are very aware of ourselves as a burden.
The kind words spoken go such a long way.
The trying to understand is felt so deeply.
Your patience is appreciated beyond measure.
We know you can’t understand, no one who doesn’t live with the same amount of pain and energy deficit can’t possibly understand. We don’t expect you to.
We just want to be loved.
Zx