Just imagine that my life was your life
Imagine you had been in excruciating pain for every minute of every day for the past 4 days, it’s absolutely constant and you are exhausted, you have absolutely nothing left. You can feel how tired your body is as every single task both mental and physical feels impossible, each time you try to say something the words are muffled and they don’t come out in the right order it doesn’t sound like you at all, it sounds like you are slurring your words.
Along with the pain, the confusion, the disorientation your body doesn’t feel like it’s yours, it doesn’t feel like you are in control anymore, everywhere hurts your skin feels sore to the touch, you feel pain from the shivers as your body feels colder, your eyes feel gritty but also like you have a hair in your eye, your hands swell you can even feel that your tongue is swollen.
Sometimes you do manage to get your pain under control but only long enough so you can finally catch a little sleep. It’s never a long time when you are like this, you will catch 20 maybe 30 minutes only to be woken abruptly as your pain levels rise further.
I am very lucky that my Dr understood from the very start about ME and the steps to take for your referral to be started. Yet many people I speak to have not been as lucky. In the first instance, you are told that you should always call your GP however just imagine for a minute that the person you trust your health to knows absolutely nothing about ME. Just think about that for a minute Myalgic Encephalomyelitis can be Severe enough to make someone completely bedridden and need to have a carer daily or need to use a wheelchair to get about. Yet you will speak to Medical Professionals, Dentists, Physiotherapists, social care teams, hospital staff and so many more who we are told to trust our health to yet they know nothing at all or very little about ME. Every day adds to my feelings of helplessness, loneliness, anger and frustration. While my body is useless I do still have a mind that remains active, some of the time at least. All of the things I wanted to achieve in life haven’t gone away and I have so many places I want to go to, so many things I still want to experience. Unfortunately, ME didn’t take that away I think it allows me to keep them close so that I can feel the shame of not being able to do them.Around our Home, we have so many little odd jobs that need doing from cleaning to painting as well as general wear and tear. So many things that I would have quickly done after a full day’s work or on my weekends off.
I have missed out on so many milestones from losing friends, family even dates in My Daughters life the latest being not celebrating her 21ST Birthday and yes COVID was a thing at the time but that shouldn’t have stopped me.I could have taken her out when things got a little better to a bar or restaurant. I have missed so many Educational Events from school plays, theatre productions to graduations.It’s not fair.
I lay on my left side each night next to my Husband, when he sleeps I will silently cry finally allowing my tears of shame and hopelessness to land on my pillow.My partner works every single hour that they can to ensure all the bills are paid.My Daughter has been doing the role of homemaker for so long that she gets tired and short with me all the time, it’s like the worst role reversal ever.
I know that there is no change from this life for me.I know that every single day of pain is not going to be the last.For me, good days are very few and far between.My life is spent mostly in my bed, a good day for me is being able to make it to our front room just across the hall from my bedroom.
Fighting for our rights
It’s not just our own bodies that let us down, right now the ME community is having to fight to ensure that people who have the illness already or those who are just being diagnosed get the right treatment.The NICE guidelines currently recommend Graded Exercise Therapy and or cognitive-behavioural Treatment for ME. The ME Community along with every charity and support group know that GET and CBT is actually harmful to ME sufferers. You would think that an illness that leaves sufferers in constant pain would have guidelines of the medicines that help people with ME. For me to get my symptoms under control and live each day with less pain it took months to find the medication which worked for me. Unfortunately, every single day people with ME are having to do the research themselves, this is due to medical professionals not taking an overall view to find out what medicines work for us.
This isn’t the life I wanted, now my life is difficult with every day being so tense and arguments breaking out for the silliest of reasons. What makes it all so much worse is that you know all of these bad days and nights are because of you.The best future that I can see for my Husband and Daughter Partner is a life without me in it.
A life with me is hard and full of burdens A life without me is a life that they could have fun againWithout me, they have a life free of medical jargon and looking after me daily someone that they should never have had to care for.
What do I have to live for?Why am I fighting with every ounce of energy that I have, surely it can’t be for my highlight of being able to make a cup of coffee once every few days?In life, I am certain of 2 things, all-consuming pain and death. That’s it that’s my life.
ME is so much more than just feeling tired
I know that a few people reading this will be thinking that I am a crank or looking for attention or the worst one of not being believed at all.Maybe you don’t know me at all and you think that ME is just laziness or that if I get up have a shower then get dressed, then that will be enough to cure me of ME.You may have had a friend whose DR said that they had chronic fatigue and with a change of diet as well as daily exercise they beat it and they are all back to normal.Unfortunately with lots of illnesses having chronic fatigue as a symptom, there is going to be confusion but that’s were the similarity to ME ends.
A bad day for me isn’t helped by rest or recuperation for me a bad day means laying in the comfiest position that I can get my body into and then staying that way as a movement means absolute agony. Even the comfiest position that I can get into will still be equal to 7 or 8 on the pain index and that’s after taking powerful pain killers like morphine, when I say any movement this also means taking a breath in or out. Fatigue for us is all-consuming and if you have severe symptoms like me it will mean that you will need help to do almost everything. It’s certainly not something that you can feel and then go about your day normally.
When I was first diagnosed with this awful illness I had an all-consuming feeling that all of this was for a reason, all of the pain, as well as the problems it has caused within my family, needed sharing honestly so that other people didn’t feel as afraid as I did. I have to fight this so that I do get to see my daughter grow up and settle down, I have to fight so that all of this pain and suffering doesn’t get to win. I have to fight so that all of the desperate emptiness I feel isn’t my life until the day I die.
So where do I go from here? Firstly I have to say that if you are feeling alone and the pain is too much you can get help. I am always here as a friend but if you are having real problems or you are feeling suicidal then you must get professional help, in the UK we have several numbers you can call and I will do what I can to include them at the bottom of this post.
I understand that feeling when the pain is too much and you feel like you can not take another minute of this. Please don’t give up you have to fight, as it is going to take all of us and all of our experiences good or bad to bring about change.
Every single day I have ideas that I want to do, yet every day my body and mind are fighting against me. I have to believe that good times are coming, we all do.
Getting Help
The information below comes from The Mind Website .
The Samaritans – ☎️116 123
The Samaritans are open 24 hours a day every single day of the year
Campaign Against Living Miserably (CALM)
Provides listening services, information and support for anyone who needs to talk, including a webchat.
Gender Identity Research & Education Society (GIRES)
Works to improve the lives of trans and gender non-conforming people of all ages, including those who are non-binary and non-gender.
Maytree Suicide Respite Centre
Offers free respite stays for people in suicidal crisis.
The Mix
85258 (crisis messenger service, text THEMIX)
Support and advice for under 25s, including a helpline, crisis messenger service and webchat.
Mood Diaries
Some examples of mood diaries – many more are available. Mind doesn’t endorse any particular one.
NHS 111 (England)
Non-emergency medical help and advice for people in England.
NHS 111 (Wales)
111 (Hywel Dda, Powys, Aneurin Bevan and Swansea Bay (including Bridgend) Health Boards)
0845 46 47 (all other areas of Wales)
Non-emergency medical help and advice for people living in Wales. The contact number for this service differs depending on which area of Wales you are in.
Papyrus HOPELINEUK
07860 039967 (text)
Confidential support for under-35s at risk of suicide and others who are concerned about them. Open daily from 9 am-midnight.
Sane
Offers emotional support and information for anyone affected by mental health problems.
Shout
85258 (text SHOUT)
Confidential 24/7 text service offering support if you are in crisis and need immediate help.
Stay Alive
App with help and resources for people who feel suicidal or are supporting someone else.
Students Against Depression
Information and support for students experiencing suicidal feelings, including a helpful safety plan template.
Survivors of Bereavement by Suicide (SOBS)
Emotional and practical support and local groups for anyone bereaved or affected by suicide.
Switchboard
Listening services, information and support for lesbian, gay, bisexual and transgender communities.
Togetherall
Online mental health community (formerly called Big White Wall). Free in some areas through your GP, employer or university.
The information above is taken from the mind website at – https://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/useful-contacts/
Thank you for reading,
See you all soon
Alisha 😘