Share a story – Denise
My ME Story …
about me : 2022 …
My name is Denise. I am originally from Manchester, UK. However, since 2002, I am fortunate enough to get to live in Beautiful Cumbria. I am 60 years young (lol … I have decided that I am not being 60 years old as I have not really lived as full a life as I had planned yet, so I cannot possibly be old). I have two children, both boys, and I am NaNaFarAway to three beautiful grandchildren to my eldest boy and his wife; my younger boy claims he is never having children, I say, we will see. I run a blog called fragmented.ME, which is how having ME has made me feel, very fragmented. My blog is kind of loosely linked to my Instagram, when I can manage to keep them in sync (@fragmented.ME.UK), which at the moment are both very neglected because of a decline in health.
how it all started : the beginning …
I first got sick in 1984, aged 22, whilst I was pregnant with my first child. I ended up in hospital for a few months with some serious liver problems, for which no apparent reason could be found. In more recent years, I came to believe it was liver issues triggered by glandular fever, which is a thing, as I had been in very close contact with a child who was retrospectively diagnosed with glandular fever. She too had been extremely unwell and I often wonder if she ended up with ME in her teenage years.
From that episode of sickness I never recovered to my former health, resilience, or abilities. I also went from doctor to doctor, consultant to consultant, and specialist to specialist, in an endeavour to find out what was wrong with me. In 1984 when I so badly needed help and answers, no one could give me any definitive diagnosis or answers.
You have to remember this initial period of illness was between 1985-1988 and no one had really heard of ME/CFS let alone diagnosed it.
In my continued search for answers, I met with some very kind and genuine doctors doing their best to help me but who were flummoxed by my symptoms and my relatively normal, yet often bizarre, investigative results. I also met with those who claimed to assure me, it’s your pregnancy, you are trying too hard to be all things to everyone, what do you expect you’re a single parent and doing it all and alone too, stress is your problem, calm down there’s nothing medically wrong with you, you really do need to calm down.
I was diagnosed with OCD, phobias, depression, and anxiety, all psychological illnesses. But, I was never diagnosed with a physical illness except lichen planus, which they believed was stress induced.
To my detriment, for years, I sadly gave up on finding a medical answer for my change in health and chose to believe those misplaced ideas that there was nothing medically physically wrong and maybe it was all in my head, maybe I was just delicate and fragile. As a result, I ended up trying ever harder to push myself through, and implementing ‘build myself up’ programmes time and time again. I was dedicated to conquering my tendencies to, stress, being delicate of mind and body, and perfectionism. Ultimately, I ended up being treated with anti-depressants and entered a systematic desensitisation program for the phobias and OCD.
Notwithstanding all of the above, the more I tried the physically sicker I got. A familiar story for those eventually diagnosed with ME/CFS.
Some of my initial symptoms were, but are not limited to, OCD, phobias, anxiety, health anxiety, catching every virus going round, regular swollen lymph nodes and glands, sore throats, lichen planus, other skin issues and allergies, recurrent dental abscesses, nausea, feeling like I was coming down with or had the flu all the time, attacks of vertigo and repeated nystagmus, moving body pains, alternated sensation in my upper back, hands and feet, MCS in the form of intolerances to previously tolerated perfumes and chemicals always triggering severe migraine, TMJ, neuralgia, daily headaches, recurrent chronic migraine.
In spite of these debilitating symptoms, I plodded on with my life trying to ‘build myself up’ and live like a ‘normal’ healthy young woman, using every option available to me to just be, or appear, to live a normal life.
Still, I just got sicker.
Work wise, I went from part-time, part of the year, job to job, always leaving through embarrassment at being made aware of how many sick days off I had taken, even though all I worked was two hours a day in school term time only. I ended up being unable to work at all for a period.
moving on : 2001 …
By 2001, I am married and have two children (one 16 and one 4). I haven’t worked outside of the home in almost ten years and I am unable to hold a job down or hold my own. I am always sick. In a nutshell, I catch everything going round and I go from one illness onto the next. I suffer with severe daily migraine (diagnosed as hemicrania continua), MCS, and all over body pain with altered sensations. My life became a real struggle.
My husband has had to take employment away from the home and only comes back on weekends. I become so very unwell that I cannot even climb the stairs. I am never without pain or migraine free.
I feel like maybe I am dying. Maybe the doctors missed something.
It is at this time, I turn back to the GP and restart my search to find out what is medically wrong. Because I now believe that there has to be something very seriously wrong. I have been with this for too long.
a diagnosis : 2002 …
In 2002, I finally get a diagnosis of ‘nuisance symptoms that are maybe mild ME/CFS or fibromyalgia and will hopefully resolve themselves in time’ (these words are a direct quotation taken from my first diagnosis letter from Lancaster hospital). I am so upset at the ‘mild’ and ‘nuisance’ elements and the idea that this will ‘resolve in time’, that after a single massive extremely emotional release of sobbing and crying, I go on to ignore the diagnose and once again bury my head, as does my husband, family and friends.
I have now been ill for best part of 20 years of my life. The symptoms have been life altering, not mild, nor simply nuisance, and they have been around long enough for me to know they will not resolve in time.
what could have been a turning point …
When I look back, I am acutely aware that this period of my life could have been the turning point. The point where I listened to my body and accepted that I was very ill.
However, had I also been diagnosed correctly at this time, as having, at the very least, moderate ME, and had I been given good ME management guidance around pacing, listening to my body, and the seriousness of pushing beyond my limits, my situation might have allowed me to take stock, accept that I had a very serious illness and stop pushing my body to do more than I felt able and than it was able.
Then I might never have become severe.
Instead, the behaviours, patterns and ways of coping, my new way of being, were very firmly being set in stone and only being told how utterly serious this illness was, and how dangerous pushing myself through and above my anaerobic threshold, could have made a difference.
My life was a series of serious boom and bust episodes.
Knowing what I know now, I wonder how I survived it and kept alive without becoming much sicker than I presently am in 2022.
sicker and sicker : the years roll on 2002 – 2018 …
Without any proper guidance on managing the illness I carried on in my usual, ‘push, rest, feel like I’m dying, rest, feel a bit better, now catch up’ manner more commonly known as ‘boom & bust’ in the ME field. I never did anything feeling like I physically could really do it. Everything was done and achieved through sheer determination and knowing, in my mind, that I was the only person who could do it, no one was coming to rescue me.
Over these years, my health got so bad that even doing leisurely activities like watching TV or reading was difficult and had a payback (PEM) in terms of more pain, illness, migraine and non recovery.
By way of an example, in one of these years, we went on a family two week holiday and I pushed myself so much, in order to take part in as much as I could, that I was swallowing the full allowance of pain medication and some, every single day and when we returned I had to take over a year out of paid employment to get over it.
Two weeks leisure had made me so sick that I needed over a year to get over it. My health was bad and getting worse.
Unbeknown to me, at the time, I was causing irreparable damage to my body, which by 2018 was so bad that it was set in stone. I would reach that time and I was never going to be well enough again to even engage in ‘boom & bust’, let alone read and watch TV for leisure.
I was now on the road to unrecoverable.
paid work …
From around 2005 I had worked as, learning support, examines invigilator, appropriate adult, SPIP practitioner. All very part time roles, for only part of the year, and mainly as supply too, which meant I could say, no, if I felt too unwell to accept a job on any particular day. This was all in an endeavour to continue to work while in reality I was so unable to work.
Eventually, by late 2018 early 2019, after months of not being able to accept work or being too sick to go in, I finally accepted that I needed to give up my lovely job, at that time, which consisted of only two days a month. Yes you read that right. I had a job that was only two days a month and I still couldn’t consistently make that.
I finally left my last role and went on the UK national sickness scheme in 2019 and was paid, a weekly small amount of income, but more regularly than I had ever been able to earn.
acceptance : 2018 – 2022 …
By 2018 I was so sick there was nothing I could do. I had pushed and pushed and simply got so sick that I couldn’t even care for my own hygiene.
It was devastating. But, it was definitely time to accept how poorly I really was. In fact, my body made it impossible for me to do anything other than accept.
It had finally pinned me down …
Acceptance is defined as, the willingness to tolerate a difficult situation, which can be an easy thing to envision doing but in relation to ME it can be so hard to do. Not just for myself but for those around me too. We had been tolerating the difficult situation for years, we had no choice, but to now finally accept that I could no longer push, ‘boom & bust’, was the hardest thing we had ever had to do.
For myself, to ask my arm to lift and see that it couldn’t was spirit crushing because I had always been able to push through even when I felt like death. Now, I had no ability to make my body do what I desired, requested, or even demanded, it to do.
It is easy to say ‘acceptance’, but when you are accepting an illness that means you lose everything about yourself and all your independence it can be very difficult in the spirit.
I can no longer wash daily, or even regularly.
I live in a darkened room, in pain.
I cannot work.
I cannot shop (well not much anyway, my husband will say differently to this one, the internet can be a wonderful thing).
I cannot clean my home.
Accepting all of that is tough. But was very much historically necessary, I was just not told how dangerous an illness ME is so I didn’t do it … and it has now been forced upon me and my family …
What followed has been, and still is, a huge readjustment in our home lives as I tried, and still do, to recuperate in order to feel better. Which, never comes.
the here and now …
Previously, I could sort of predict what would make me unwell, what would be too much and what I might get away with. I knew when a crash was coming based on how hard the things I had done felt in my body. Now, every day is extremely hard for my body to do and tolerate and there is no rhyme or reason for really bad days where I look and feel as though I might be dying over the better ones where I am very poorly but less unwell than those ‘dying’ days.
Some days I am worse than I have ever been despite sleeping hours and hours and doing nothing for weeks and on other days I can make it to the bathroom without making myself sicker. Mostly, I simply go from the bed to the settee, back to bed, and round it goes.
That in a nutshell is how I now live, or more precisely how I am alive, with ME. Not that previously I had been able to live my life to the full. But, what I had, ‘boom & bust’ was much more preferable to what I have now, ‘a living death’.
summary of many ailments & diagnosis : no help …
I live with many weird ailments and the following list of diagnoses. Namely: severe ME/CFS; fibromyalgia; hemicrania continua; migraine; light sensitivity; smell sensitivity; cluster headaches; MCS; TMJ; MCAS; POTs; a history of depression, anxiety, OCD, phobias; and lots of other symptoms and illnesses.
I live with my husband and have been awarded a personal assistant (PA), paid for by the local council. My husband does everything for us and because of the multiple chemical sensitivity I had to let the PA go. She was a lovely lady, but her one and only visit made me so unwell, too sick to recover in time for the next one, that we had to let her go after that fist visit. So ultimately everything is on my husband and when he is not here it is on me.
Anyone with ME/CFS will know this means no drinks or food, weighed up against making yourself sicker. I make my choices in the moment and cater for the one with the biggest need in that moment.
Sometimes I eat and drink and other times I cannot afford the payback and so I don’t. I simply wait for my husband to return.
Since 2020, and the coronavirus, my husband has been working from home and when everyone from his team went back to the office he has been allowed to stay mainly working from home, which has been a godsend.
the final chapter …
As time has moved on so have my experience and understanding of ME/CFS. I am well aware I will probably die from this illness and that in my lifetime treatments or a cure will might not come. But, I sincerely hope that for others, younger or less severe than myself, that a diagnostic test, treatment, and even a cure, is found very soon, so they can live the life they have been given.
Thank You to Smile For ME, and to the very sad lost life of Merryn, which brought about Merryn’s Smile Day, for giving me the opportunity to share my story and I hope it helps someone in some small way to not feel alone with this awful illness. You can contact me through my website if you need a listening ear (please allow time for me to respond, I will … eventually). Please, don’t ever feel alone with this illness.