Invisible Illness and Me

I wanted to write to you all to explain a little more about me.

I have a full time day job, I work in the mental health sector and have done for many years.  As you know, I also have my small business, making handmade jewellery and designing art cards.  I live in a lovely little flat with bearded Craig, the love of my life, and have lots of friends and a good family around me.  To many it seems I have a pretty perfect life.

In reality my life is a daily/ nightly struggle.

Now I haven’t come here for sympathy.  I have come here to tell you about this, so you understand more about me as a person, what drives me, where my business inspiration comes from.  I also want to spread the word about invisible illnesses.  It’s a bit of a hot topic at the moment and I am desperate to keep the momentum going, because it’s vital people who experience the stigma and frustration of having a disability nobody can see or understand, are seen and listened to.

I was diagnosed with Fibromyalgia about 3 years ago, after many years of being told that the pain and fatigue I suffered were due to depression.  That’s really gonna need a post or 10 of it’s own to fully explain.  In a nutshell my family GP was a locum psychiatrist and prescribed me years and years of antidepressants that didn’t work, until he ran out of things to prescribe and told me I was ‘non compliant’ with medication.  I complained about him, saw a new GP, who listened and took my pain seriously.  I got this diagnosis, Fibromyalgia (FM), finally I had an explanation as to why I had suffered for so many years.  Now, 3 years down the line, my even newer GP thinks I actually have M.E (or CFS or SEID for the really up to date people).  This is because the pain is more manageable than the fatigue I suffer, and exercise, no matter how small can put me in bed for days at a time.

I do hold down a full time job (just), and the only way I can do this is by having daily care and support from bearded Craig.  I wake up in the morning feeling more tired than when I went to be, I have no energy to bath and cannot stand up long enough to shower.  Occasionally bearded Craig will help me to bath.  I cannot wash my own hair as the pain and fatigue in my arms makes me feel nauseous.  I rely on facial wipes and sponge baths at my bathroom sink.  Dressing is exhausting.  I always apply make up before leaving the house for work, I couldn’t bear to let people see me looking as ‘dead’ as I do when I wake up.  I rely on bearded Craig to make me tea and breakfast, if I am feeling well enough to eat.  I am driven to work, I cannot sit on a bus comfortably anymore, sitting upright in a chair can be excruciatingly painful and I cannot stand still for more than a minute or two.  I do not drive.  I have such horrendous mental fog, memory and concentration, I have never been able to pass a driving test and even if I had, I am not sure I’d be safe on the roads!  I have lots of coping mechanisms to get through the day at work.  I am lucky in that I can manage my own diary and workload.  It’s mega difficult to get through a day, sometimes I need to travel quite a bit and this is exhausting, lots of taxis and trains (luckily with trains I can usually find a comfortable way to sit, but have been know to sit in the aisle on the floor to be comfy).

What keeps me going is my love of my work, I support people who have mental health problems, I adore doing this, I thrive on helping others.  It gives me such a sense of achievement, and that helps to keep me well in my mind, if not my body.  I have been hell bent on continuing to work full time for a long time.  It’s only been recently that I have started to consider alternatives, because I know my body is rebelling against me and dedicating myself to my work, is horrendously impacting on my ability to live a fulfilling, happy, social life.

When I return home from work, I am drained.  I do very little, and try to maximise on rest for the next day.  Sometimes I go straight to bed for the next day.  Beareded Craig?  He cares for me, he cooks for me, he brings me tea, he wipes my tears away.  God I love that man.

Last week I did something pretty extreme, and went, on Wednesday night to an amateur theatre group.  My friend invited me, and I decided I needed to do something other than sleep and work.  So I went along.  I enjoyed myself, I met people, and I acted, something I haven’t done for a very long time.  I used to do a lot of drama, and I love to sing, I fronted a rock covers band for a long time, before illness took it away from me.  I loved the group and the people were lovely.  I wont lie, it was a struggle, and I yawned my way through it and the next day at work was pure hell, but I am going back, and doing a 2 night show in May.  I think I am gonna book a few days of work after so I can recuperate from it.  I have decided to start putting my social life higher up on my priorities scale.

Part of the reason I am trying to focus on growing my small business is so if I can’t work anymore, I will have something meaningful to do that will pay my bills, keep a roof over my head, and enable me to live my life comfortably and happily.  I see so many people suffering from illness, in these times when our economy and government do not help us.  I don’t want to be victim to the welfare state, I want to thrive despite my illness and I want to help others to do the same.  I believe that my life is in my hands, and it’s up to me to overcome my own battles.

I also desperately want to be a source of support and encouragement to people like me.  People who’s illnesses are not visible.  I am developing a range of cards and charms to gift to people who have these struggles, to let them know they are not alone, that despite their illness not being visible, you know what they are going through, you remember, and you are with them, supporting them to get through each day.

I am the woman in her mid 30’s, wearing a suit on the train, make-up done perfectly, little trolley case on wheels, looking like all the other professional commuters, desperately needing that last seat.  But there’s a teenage boy sitting in that seat now, and he’s playing music loud on his ipod, tapping his foot in the aisle.  Do I tap him on the shoulder?  Ask him if he minds if I sit down? Because I am disabled?

And before you think he is the one that should give up his seat.  Do you know him?  Do you know what he is suffering from?  Why he might need that seat more than me?   Maybe he has the same illness I do.

With love from Lis xx

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