Guest post by MerelyExisting is ME: I wish . . .

I wish…

I wish I could tell you that this past year has been a good one, that things have improved, that I was feeling better… sadly I can’t

I wish I could adequately convey to you how horrific, brutal, excruciating, crushing, overwhelming and relentless the very many multi-system symptoms of Myalgic Encephalomyelitis ME/Chronic Fatigue Syndrome CFS/Systemic Exertion Intolerance Disease SEID are

I wish you could understand how utterly unwell I feel, and how just about every part of my body is not working properly

I wish you saw the crumpled heap that I become after trying to do the very smallest of things

I wish I didn’t feel so pathetic, useless, invisible, stigmatised and guilty, even though I am fighting my hardest to get through every day

I wish that I didn’t feel like such a burden to everyone for feeling this continually unwell

I wish you could really understand how difficult trying to ‘live’ with this is

I wish I could tell you how scared I am for what the future holds

I wish I didn’t have to worry so much about my finances, and how I will manage to continue to support myself

I wish I was able to look after my elderly parents instead of them helping to look after me

I wish I was still able to work in the career that I loved

I wish I hadn’t been told that I would get better after six months, after two and a half years I can no longer keep that hope

I wish that I could sleep soundly and wake up feeling refreshed, well, to have some energy, to not feel like I have flu and a stomach bug plus a hangover and jetlag, having just run a marathon and been flattened by a steamroller all the time; to not be in constant pain, aching and stiff, that my muscles and joints worked properly, to be able to think and concentrate without my brain and body hurting, to not have throbbing headaches, searing migraines, eye pain, visual issues and sensory overload, to not have a raging sore throat, swollen glands and burning rashes, to not feel so dizzy and nauseous, to not have palpitations and my pulse pounding and racing, to not struggle with balance and co-ordination, to not have intense muscle spasms and restless limbs, to not have such problematic gut and bowels, basically to not feel like death

I wish I could walk more than a few steps without feeling that I am about to keel over or pass out

I wish I could get up and down the stairs with ease

I wish I could get showered, dressed and then be able to leave the house, and that I wasn’t either housebound or sofabound or bedbound

I wish that getting a cold or viral infection didn’t nearly finish me off

I wish I could hold conversations and laugh with family and friends without feeling really ill

I wish I could have some fun or even enjoy a bit of social life

I wish I could read a book or watch a film and remember it

I wish I could sit out in the sun

I wish I didn’t have to observe the world passing by from my window

I wish I didn’t feel so alone in having to deal with this

I wish that you knew and could see the ‘real’ me; the one that isn’t having to battle with my body every day, the one that isn’t living in pyjamas, either freezing cold or too hot, wearing earplugs and sunglasses indoors with the curtains closed, the one that isn’t struggling to remember what way is up, the one that doesn’t have to choose between making a phone call or using the computer or doing the laundry or preparing a meal or getting washed or dressed

I wish there was adequate, appropriate and proper healthcare support for ME

I wish there was much greater recognition, awareness and understanding of the immense strides in biomedical research taking place into ME

I wish that you would please do one thing and help the fight for support, awareness, understanding and research for ME

I wish that I didn’t have this horrendous, serious, complex, debilitating, chronic and misunderstood neuro-immune illness… but I do, and whilst the reality is so much worse that I am able to describe to you, no amount of wishful thinking is going to change that

My wish is that WE can start living again, and not just existing… what’s yours?

Guest post by MerelyExisting is ME @tweetsforMECFS 

For #May12BlogBomb 2016

(#May12BlogBomb 2015 post We Are Warriors )

Some of the many useful links if you want to know more about ME/CFS/SEID…

https://www.actionforme.org.uk/
http://www.hfme.org/
http://www.investinme.org/
http://www.meassociation.org.uk/
http://www.meresearch.org.uk/
http://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/
http://www.tymestrust.org/
http://www.wames.org.uk/
http://www.25megroup.org/home.html
https://batemanhornecenter.org/
http://www.canaryinacoalminefilm.com/ http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm http://www.cfstreatmentguide.com/national-and-international-cfsme-organizations.html http://changeformechangeforus.co.uk/
http://emerge.org.au/
http://euro-me.org/
http://www.forgottenplague.com/
http://www.hope4mefibroni.btck.co.uk/
http://iacfsme.org/
http://www.imet.ie/
http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
http://www.irishmecfs.org/
http://www.meaction.net/
http://www.me-cvsvereniging.nl/
http://med.stanford.edu/chronicfatiguesyndrome.html
http://www.me-gids.net/index.html
http://me-pedia.org/
http://www.name-us.org/index.html
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx http://www.openmedicinefoundation.org/
http://phoenixrising.me/
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/
http://solvecfs.org/
http://www.stonebird.co.uk/
http://www.virology.ws/mecfs/
http://voicesfromtheshadowsfilm.co.uk/

Guest post by MerelyExisting is ME @tweetsforMECFS For #May12BlogBomb 2016