I never look forward to ME Awareness Month with a sense of anticipation, more of existential dread. But I realise it is important for the many suffering with this much maligned condition, that the community continue to raise awareness. For the many suffering, those yet to be diagnosed, the many minus any guidance, help or support.
ME Is Difficult To Live With
Cold Play’s ‘Fix You‘ speaks it for me, as it did virtually from diagnosis 1+ year into MEcfs, in 2005. Their music has continued to support me through the past 20+ years, as has that of other artists. I felt broken, hopeless and tossed on the scrap heap. My faith plays a huge part in my life and in helping me cope.
Many would describe life with ME as just existing or just about surviving. I won’t try to sugar coat this, or begin to describe all I have endured. It would take far too long. But My Story with MEcfs‘ says more. Along with GET My Awful Experience. It took me a long time to reach the point of writing these two pieces.
ME Impacts People’s Lives
MEcfs is so much more than being tired. It is real and takes a wrecking ball to people’s lives, families, circumstances, careers, finances, hopes and dreams. Many, are not believed or supported, just belittled and gas lit. I have experienced all of that. It MUST change.
We pretty much lost everything to MEcfs. But we endure, fight, battle and survive. Too many still do not, cannot. Not everyone has a reliable or any advocate. Last year, miraculously, we moved home – less than one mile. But what a difference that one mile makes to the confinement MEcfs presents in my life. My husband, and carer, has had to reivent his career over many years. Taxi driver, Auditor, Ad sales, you name it…the list is loooong. He still works, he still cares. Hopefully he can retire in the not too distant future. He needs a rest.
Some Years I Would Rather Forget
The years of 2022/23 for myself were again horrendous. Experiencing an unexpected allergic reaction to an antibiotic, resulted in many trips to A&E assisted by paramedics. The months that followed were just terrible. On 100% bedrest, being barely able to eat or drink. Begging for help, which wasn’t forthcoming. With my husband again having to take time off work, to nurse me with whatever food he could think of that I might be able to swallow. Most of which I couldn’t for some while. I choked continually. With a lingering thought, is this the time I lose the ability to eat? Being all too aware of ME sufferers in that very situation. I lost 1½ stone in weight in about 6 months. It took about a year to get back to eating fairly normally. With my jaw misaligned for two years. The constant cracking was uncomfortable and disconcerting.
I had also experienced much of this at the onset of MEcfs, not knowing at the time that it was in fact – MEcfs. At that time I dropped below 8 stone in weight. In 2022/23, as it began to drag on, I told the GP by phone that I wasn’t going through that again. I had to beg them to make a home visit. There still was little to offer, but they did grasp that the required referral needed to be expedited. I waited six months! I will not be the only one who has gone and is going through this scenario.
Unwarranted and Unwanted Opinions
This is hard to write, and feels disloyal. But I am still triggered by it. I have for the most part let it go, it is thd healthy and wise thing to do. But the memory (which thankfully begins to fade, but the reality doesn’t) surfaces. Of being lectured, disbelieved and attempts made to dissuade. (Discussed in my piece Meeting the EpiPen.) Addressed, by some family, with disapproval about the practical and completely rational measures we had to put in place, which I still have to use. Why, was completely baffling to me. I was asking for nothing, just wearily conveying news. I felt compelled to, I’m not entirely sure why. With a friend commenting, ‘well, are they going to come and feed and wash you as they disagree so much‘? I appreciated the compassion.
What Did I Need
The main measures were a fridge upstairs, and a stairlift. The stairlift recommended by *ASC. I already had (and have) loads of other measures in place. The latter two, I should have put in place years earlier. The fridge ensured and ensures I have access to food and water while upstairs, and the stairlift for when I was eventually able to venture downstairs for a short time. My dear friend, who is a local Councillor, officially cut the tape at the stairs for me. I was so touched.
I also remember the smile on the Fridge Delivery guy’s face, seeing how much my Electra – the goddess of all chilled foods and drinks – meant to me. As he ably carried the fridge upstairs, without complaint or question, and placed it next to a clothes rail and plugged it in! With advice to let it sit for a little while. Acquiring the stairlift took far more effort. But we got there eventually.
Perception
Unfortunately, much of the aforementioned experience is the reality of MEcfs for so many people. The STIGMA! It stings and cuts like a knife, and the pain can resurface at times like this. You then note it, don’t dwell, then tell it to take a walk. Appreciating the very fact that once again you doggedly ploughed through yet another massive relapse. And why I really don’t enjoy the Awareness Days/Weeks/Months. At all. For how much longer will those with chronic illnesses and disability have to continually justify their existence? It’s not reasonable.
One could go as far to say that in some aspects of ME life, there is simply NEGLECT. People struggling on alone. And why we do, and often reluctantly, have to continue to bang the gong! The fact that I am still having to, 20 years on in MEcfs years, is dreadful.
If You Need of Support
Both The ME Association and Action for ME have help/support lines. ME Action Network has support group online calls. The times and availability of all these support options do vary. So it would be best to visit the links to explore availability.
IF YOU ARE IN CRISIS please call Samaritans UK.
Their number is free from any phone, 24/7, 365 days a year.
SAMARITANS PHONE NUMBER 116 123
There is Hope
Despite all the struggles I convey in this piece, my blog features the word Hope. Hope keeps me going and I am an advocate of hope! And, if you know my writing, you will know I can also be quite outspoken. It tends to come with the territory. Hard though that is, those of us that can speak up, do. The many locked in shadows cannot.
Thanks to tenatious Campaigners, Researchers and Supporters. There is hope. But ME Research needs more funding.
Learning About ME
To find out more about ME (MEcfs) please visit:
- ME Research UK
- Decode ME
- The ME Association
- Action for ME
- ME Action
- The #ThereForME Campaign
- UK MEcfs Biobank/Cure ME
Closing Thoughts
I hope awareness and care for ME sufferers will improve. But that can only happen with voices and the will for change by those who can initiate it.
So, to UK Members of Parliament, as the Disabled and Chronically ill are vilified and blamed – just Fund the Plan. People young and old are suffering. Needlessly losing years and precious life to MEcfs.
Thank you
Have a blessed day⚘
*Adult Social Care
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