The Prevalence of Depression Among Fibromyalgia Sufferers

Right now, I am fighting the urge to have a cake and then a nap!  Its 09.45 and I have been up since 7am getting my daughter ready for school. We were late again!  I didn’t sleep well last night.  My little guardian angel is saying “write your piece and connect with people, it’s what you need”. But the larger meaner angel is saying “eat the cake and go to sleep”. We all know that once this is written I will have the cake and of course a nap!

I am a single mum of a 5-year-old girl.  When I was first diagnosed with fibromyalgia I was coping – just about! Well, I say coping I was plodding along just managing to stay afloat.  I had a job as a nurse, I went out walking, and did daily tasks as required.  Then I had a fall in November 2020 and I was hospitalised for 5 days. I dislocated my patella and tore my ACLs.  Once discharged, I was at my Mums on a bed in the lounge bed bound.  She took over my ‘motherly duties’ and looked after my daughter.  After 6 weeks of this, my daughter and I needed to go home. I fought my way back to some form of mobility.  I wanted to look after my daughter and be her Mum.  During this period, I had been off sick from work.  I have other health conditions as well as the fibro.  Such as but not limited to; C-PTSD, EUPD traits, Interstitial cystitis, urinary leakage, IBS, GERD, plus let’s not forget the knee/mobility issues.  Due to sickness absence, I lost my job as a nurse.  I had informed my employer I felt well enough to go back to work, although in the end they went through the NHS stage 3 sickness absence policy and I was dismissed.  This career gave me purpose, worth, an outlet, socialisation, and of course an income.

Due to the fall the severity of my fibromyalgia has increased.  The pain I experience some days is off the scale.  The analgesia I take doesn’t hit the spot, I can barely walk or do household tasks.  I feel so fatigued that once I drop my daughter to school I go back to sleep on the sofa.  When I wake up, I do not feel refreshed.  I do not eat properly; I do not have the energy to fix myself decent meals.  When I had my PIP assessment the assessor asked “why do you not cook yourself fresh healthy meals?”  I embarrassingly informed her that I do not have the energy.  My daughter eats at school so she is eating well.  By the time I have got her home, done all that needs to be done, given her every ounce of energy I have, and put her to bed I do not have anything left in the reserve tank for myself. 

Suggestions have been made about meal prep, or making food during the day so I have something to eat when my daughter is in bed.  Trying to explain to people who have no idea what fibro fatigue and exhaustion is like, is equilivant to me advising a mechanic how to fix a car.  I inform them that I am too fatigued and consumed with brain fog but I am mostly not heard. People are trying to be kind and helpful, even though I haven’t asked for their advice. People like to give advice, even when not asked for.  That’s because most people want their opinions to be heard with regards to what they think will help you.  Someone with no experience of my condition at all.  Yet I know what I need to do, I just can’t. I understand the logic in their suggestions.  But they do not understand this type of fatigue.  Making a drink tires me out, let alone cooking. I want to scream “if I could do it, I would. I used to do all this stuff, but now I am unable. I am not lazy; I just cannot do it”.

Since losing my job, I have tried to get another.  Unfortunately, due to being registered disabled since my fall I am unable to do most nursing jobs.  There are limited nursing jobs that are home or office based.  I was getting through to final interviews but being ‘pipped’ to the post I was informed.  Or I was not flexible enough for them due to family commitments.

For months I have sat here, hiding away from the world.  Mourning my old life and who I used to be. I feel robbed.  Fibromyalgia has stolen who I am, and I don’t know how to get me back.  I have a good brain that I want to use.  I just have an invisible illness that most people do not understand.  I am not aware of any employers who would allow an employee to have a nap mid-way through the day to help them through a fatigued fibro episode.  Where does that leave people like me?

Due to all the above, I decided that I would give up my nursing pin, and re-train. This wasn’t an easy or light decision.  I began my nurse training in 2002 and gained my nursing diploma in 2005 – something I worked so hard for and I am immensely proud of.  But now it feels that nursing isn’t the profession for me anymore.  I have always enjoyed helping people and I know that’s still the path I want to follow.  I decided to re-train as a counsellor.  I am currently studying level 2 counselling skills 1 day a week, with the hope of going onto level 3, and then level 4.  This will take 4 years in total.  Once trained I can begin my new career, if my fibro allows me.  I was assessed by ESA as being unfit to work due to fibro. I have no idea what the working future holds for me, but I want to do something positive and purposeful.

Of course, money plays a massive part in my new career choice.  If I am unable to obtain funding from different sources then I expect my new career of choice will also fall through.  For now, the course gives me a purpose.  I am learning, engaging my brain and speaking to people.

Not only do I feel that fibromyalgia has taken my job from me, it has stolen me from me.  I used to be a vibrant, proud, well-presented lady.  Now I do not bother with myself.  I wear baggy clothes, no makeup, shower (when able), and hide away.  I do not like myself, who I am, and what I have become.  Daily I am fatigued and in pain.  I feel robbed of my old life.  I don’t know who I am anymore, I feel all consumed by this illness.  It controls me, and I do not know how to regain control of my life again. Planning things scares me incase I am unable to do them.  If I do manage to do them, they will wipe me out.  I have to ensure my calendar stays clear the following days, so I can rest.  I make excuses to my daughter as to why I can’t take her to the park, or for walks as often as I used too.  She remembers the old me too!

Presently I feel like I have gone back to the womb.  I am waiting to be reborn.  I have no idea who this new me will be, but I have hopes that I can once again be purposeful.  I need a purpose to feel I belong in the world (other than being a mother).  I am only 42 and I do not want to live on benefits for the rest of my life.  I have dreams and desires that I want to fulfil – they all seem so distant right now.  I have a personality, opinions, knowledge from 20 years of nursing – yet I feel useless.  The illness and system make me feel useless and unwanted. 

Writing this article is the beginning of one of my dreams of being heard.  I have so many more words inside me that I want to share.  Not just about fibromyalgia, about mental health, physical disability, single parenting, child and domestic abuse. I write and illustrate children’s stories that I want to be published – they make children laugh.  There is nothing more beautiful than your words making children laugh.

I am hoping others can resonate with my words.  Surely, I cannot be the only one who has lost their old life, mourns who they used to be, and feels stagnant.  We need to be seen and heard. 

All fibromyalgia warriors are heroes in my eyes. Find a purpose whatever it may be.

Get up, show up, and try. But on those days that you really can’t, there is nothing wrong with having that cake and a nap, which is exactly what I am off to do!