PRE 1984 (pre illness) ...

I was always relatively healthy, except for migraine, which started when I was 11 or 12 and came either if I was sick with a virus or something else, and when I was tired or due to get my period, oh and really not liking the sun because that too gave me migraines. But apart from those reasons, which are clearly linked to having a migrainous brain, I didn’t get any sicker than your normal young and healthy person.

During my school years, I was extremely active, I’d played for the school rounders & netball teams, as well as ran in competitions for the school, and I continued this level of activity when I left school too.

After leaving school I did lots of travelling. I lived and worked in many parts of UK, The Isle of Man, France, and along the Mediterranean coast line cities and towns. And I only ever got sick once with a bad case of tonsillitis (while working in the Isle of Man).

 

1984 - 1985 (getting sick & pregnant) ...

So when I did start to get sick, sometime in mid to late 1984, with the most horrific migraines and other symptoms (see below), it was understandably alarming and worrying.

I thought I had a brain tumour.

I thought I had cancer.

I was sure I was seriously ill.

The symptoms were too severe to be nothing.

I was worried and scared.

My go to thoughts were, could I maybe have HIV/AIDS?

My initial symptoms were:

• more frequent and more severe migraines
• an inability to cope with scents, chemicals and smells, which now always triggered a migraine
• continual swollen glands & enlarge lymph nodes under my arms
• sore throats every single day
• always feeling like I was coming down with a bad case of the flu
• extreme nausea
• attacks of vertigo and repeated nystagmus
• anxiety
• phobias
• OCD
• severe side effects from things previously tolerated, especially alcohol (I haven’t touched alcohol since this time)

Whilst initially experiencing all these symptoms one of the many doctors I saw, at one of my many visits to A&E or emergency GP call outs, suggested I get a pregnancy test. And so I did and ...

It was positive. I was pregnant.

I was ecstatically over the moon. I was elated.

Pregnancy

I hadn’t been aware that I was pregnant. I hadn’t missed a period. And to feel so shockingly unwell during my first pregnancy was quite alarming. And to also be told the symptoms that I was experiencing were just pregnancy symptoms really concerned me because I’d planned to have lots of children and I knew for sure that I couldn’t do this again, especially whilst looking after my first child.

That said, I wasn’t convinced. My body was telling me something else. I felt like I knew that I was very sick. But, this information from my medical team made me feel that maybe I wasn’t sick after all, I was simply pregnant. I’d never been pregnant before and I’d never been this sick before. So really, I didn’t know, maybe this was purely pregnancy symptoms.

And so, what should have been a wonderful time, became, instead, one of the most sickest and unsettling periods of my life.

This ‘doubting’, what my body knew deep into its soul, set off patterns of self-doubt and self-questioning, as well as a very unhealthy doctor / patient dynamic. Both would continue to damage me for years.

Furthermore, and sadly, early pregnancy didn’t run smoothly by any means.

I was bleeding heavily for the first 3-4 months and at around 6-8 weeks I was told I was loosing my baby.

I was miscarrying ...

And finally at around 8-10 weeks I was told by the maternity specialist at St Mary’s in Manchester that I’d lost my baby. They added that it wasn’t a complete miscarriage and so I’d need a medical procedure to ensure nothing was left behind. This would also ensure that I didn’t get septicaemia and give me the best chance of getting pregnant again. When I refused to accept this information and have the D&C procedure there and then, they reluctantly allowed me to go home and take two weeks ‘breathing space’ in order to accept the so-called inevitable and to then come back, in two weeks, ready to stay in and be operated on.

During the whole of this heartbreaking two weeks my body behaved like I was miscarrying. Yet, deep inside I still felt pregnant.

Two weeks later, prior to the planned operation, when I had a scan to confirm to me that the baby was dead, something astounding was gifted to everyone present that day. The room had filled with an overwhelming and deafening silence as we all tried to figure out what the unexpected echo of the sonogram was actually telling us.

The truth quickly dawned ... my baby, my firstborn son, had a heart beat that echoed so loud it was shouting out my belief in something higher than me and preparing me to have distrust in the whole medical profession for the rest of my life.

The atmosphere from that moment in time has stayed forever in my memory. And so I was proved right and they’d been so very wrong. And more importantly, all was well with my baby.

My baby was very much alive ...

From then on, even though my symptoms continued, most of them were blamed on pregnancy. Until, at around 18-20 weeks, my eyes went yellow and I couldn’t stop vomiting and had other symptoms of a serious liver issue.

Due to this episode I was rushed to hospital and ended up spending a few months in there with what turned out to be glandular fever. Unconfirmed at the time because they had no idea what was wrong with me. They were asking the wrong questions and looking in the wrong places for the answers. Another pattern that would continue to confuse any diagnosis, or much needed help, I could have gotten.

 

1985 (first child born) ...

On the 6^th of May 1985, one day after my 23^rd birthday, I gave birth to a beautiful healthy boy (boy_1).

After giving birth to boy_1 I stayed in hospital for five days and then went home to my mum and dads house. I stayed there for the first six months of boy_1’s life. Firstly, because my flat wasn’t ready, and secondly, because I didn’t feel well enough or strong enough to care for him alone.

During this time, I still had all the symptoms I’d previously had and now I was so weak that I was unable to stand or hold my baby. I felt really worried about his safety. On top of this, I was breastfeeding and developed mastitis, a breast abscess, and had to stop breastfeeding because we couldn’t get control of the infection. Long term, this left me with a very a large troublesome cyst.

During the six months of living with my parents, we called the emergency doctor, the midwife, and lots of other medical professionals, many times. My symptoms were worrying and weird at times. You couldn’t possibly feel the way I felt and not be afraid they were missing something and you were in fact seriously ill and dying. And the only help I was ever offered came from an emergency GP who told my dad:

give her this Valium, she’s just stressed ...

Obviously, I didn’t take the Valium, nor did I visit the GP much in person unless something new and worrying came up. That said, my symptoms did continue to varying degrees depending on how tired I was.

After six months living with my parents’s support I reluctantly moved into my own place, just me and boy_1 ...

 

1985 - 1990 (single parent years) ...

1985 ...

Gave birth to boy_1 (see above) ...

My Health

I spent most of my first year, as a sick single parent, having test after test, with a notable lack of further investigations, and nothing much conclusive ever coming from any of them. Consistently the replies I got were:

your tests are normal ...

what do you expect when you're a single parent and trying to blah blah blah ...

don't worry so much ...

don't expect so much from yourself ...

you're doing great ...

Deep inside I could feel I was getting sicker and sicker by the month. Knowing you are getting sicker, but having no positive investigative results to show this, can be confusing and controversial. Sentiments that most chronically sick people with ME/CFS will no doubt identify with. Yet, because I'd been told it was the stress of being a single parent I continued to try to ignore the warning symptoms as much as I could so as not to keep bothering the doctors with my many health worries. That said, I definitely still made more GP visits and call-outs than the general 'well' public did! My now very large medical file will contest to this.

1986 ...

My Health

Being a sick single parent was increasingly hard. I was often at the doctors, and even consistently called the emergency doctor out. But most consultations with medical professionals concluded with the doctor repeatedly reiterating ...

I am pleased to inform you, all your tests are 'relatively' normal ...

In this year, 1986, I did, however, finally receive a diagnosis of a skin condition called Lichen Planus, which had developed during pregnancy and was now finally diagnosed.

1987 ...

My Health

This is the year I questioned if I was maybe getting depressed. I was anxious most of the time and lost weight drastically. I was having severe panic attacks, I developed OCD and a phobia that, at the time, I daren't even discuss with anyone ...

1988 ...

My Health

I was definitely depressed. Still very anxious. But I developed some skills that I could use to deal with the anxiety; and so not all my anxiety was turning into panic attacks. My OCD was wild and running the show. The phobia was huge and still very much a secret ...

1989 ...

This year saw boy_1 go to nursery.

My Health

Starting nursery was something we had both looked forward to and something that, at the time, I thought might help my health improve. Instead I continued to get worse. Having to consistently do something over and over, for instance like getting boy_1 to nursery on time, was making me sicker and taking away much of my ability to carry on for the rest of that day. Every single weekend was spent, in our PJs, with me resting and trying to recover enough in order to start the week again. We called these weekends 'treats'. How else would I inculcate PJ days and lots of doing nothing into healthy boy_1's life.

school holidays were a blessing ...

Boy_1 was a beautiful boy and, I am sure, he was very aware of just how sick I was because he behaved so well. I even taught him some very firm, and grownup for his age, rules regarding what he could and couldn't do when I had a migraine and I had to be alone in the dark bedroom in order to recover.

and he obeyed them to the letter ...

I was now realising that I could not consistently do anything without a few days recovery in-between, at the very least 1 or 2 days recovery time. 

1990 ...

This year boy_1 started school.

My Health

In the UK, the school year starts September, but ultimately, I ended the year in great struggle and denial. Because for some reason, probably trying to appear normal and because it was expected, I got myself a part-time job at the school where my son went.

Working part-time, and for only part of the year, was simply too much for me. But, it became another pattern I would continue to live my life by ...

getting part-time jobs, for part of the year, and then when I got too sick to work just leaving them until I felt able to join the cycle of pretence again ...

All of this, just to feel like I was living some semblance or normality.

My symptoms were very much the same as at the start of my illness, in 1984, but now I was getting good at ignoring them and getting good at living the pattern of working part-time for part of the year and spending the rest of my time doing nothing but rest and recovery.

deep inside I knew that I was still getting slightly sicker with every month of living this way ...

 

1990 - 1995 (single parent years) ...

1990 ...

My dad bought me a car this year because I could no longer walk everywhere, like I used to, and the smells and fumes on the buses were making me so poorly that I'd be in bed for days on end with never ending migraines. This would result in boy_1 missing school because I was just too poorly to get up and get him there.

My Health

The symptoms that I had experienced initially with the illness were never ending and ever interfering with my plans, but the depression, anxiety, OCB and phobias were now interfering so much so that I had to seek help on several occasions. The GP offered me medicines for depression and anxiety so many times, but the OCD and phobia were stopping me from taking these medicines (anyone who knows me well knows the reasons behind this, I just don't want to share here), and accepting their help in order to maybe feel better long-term.

1991 ...

My Health

This year I finally accepted treatment for the depression and anxiety. The medication I was given was twofold and worked well both for the depression and for the anxiety but not for the OCD and phobia, which were still kept secret from the GP. I continued to secretly suffer greatly with these, but they were impacting massively on my normality and everyday life. I am still reluctant to document their details on such an open space and so I will continue to refer to them as the OCD & Phobia, which might now, in 1991, be a few phobias in reality.

1992 ...

Despite being so unwell, and trying to work part-time, I now started college to redo my English GCSE, and start a psychology GCSE and a Sociology GCSE. 

My Health

By the close of this year, taking treatment for depression had made me realise that I had been slightly depressed. Who wouldn't be with such a dreadful undiagnosed and often unbelieved illness. But now the depression and anxiety was lifting I was very much aware how physically sick I had been in the beginning and unwell I still was. And so, instead of the symptoms improving, like I'd been told they would, these symptoms were progressing like wild fire. This leads me to now conclude that it was the initial illness and its symptoms that caused the depression and anxiety. And now these were lifting I was still left with the bloody awful, ever growing, symptoms of the still undiagnosed illness.

By way of a recap, I was now suffering with:

• more frequent and more severe migraines
• horrific eye pain
• jaw & face pain
• an inability to cope with scents, chemicals and smells, which now always triggered a migraine
• continual swollen glands & enlarge lymph nodes under my arms
• sore throats every single day
• always feeling like I was coming down with a bad case of the flu
• extreme nausea
• attacks of vertigo and repeated nystagmus
• anxiety
• phobias
• OCD
• severe side effects from things previously tolerated, especially alcohol (I haven’t touched alcohol since this time)

One very notable 'new' thing I developed, in this year, was horrific pain in both my eyes that felt like someone trying to twist the eyeballs out. When it comes now, it can lasts for months at a time, and the pain radiates up to my head, down my neck, into my face, and is bloody unbearable. On the very first day that I woke up with this, I visited the GP three times in that one day. I had a brain scan, some drops in my eyes that made me feel terrible (if you've had them then you'll know), and lots of other tests, all on that very first day of symptoms. The day concluded with the neurologist telling me ...

sorry, but you’ll be pleased to know, we can't find any reason for this ...

it must just be a different kind of migraine ...

FFS ... My life in a nutshell ...

it's because you're a single parent

it's because you're stressed / depressed / working too hard / doing too much ...

it's a different kind of migraine

And so it continued ... I now have typical migraine, ocular migraine, cluster headaches, and sometimes I get a combination or all three together. NIGHTMARE ...

1993 ...

I passed my GCSE's with A for English, A* for psychology and A for sociology. I also started A-Level psychology and a counselling diploma in September of this year too.

My Health

My health was still appalling but I was now achieving things in my life by keeping to a very delicate and finely tuned schedule. We went to the theatre once a month. I'd stopped working part-time. Weekends were still mainly PJ time. And during the day I did my courses. But the counselling course would now need boy_1 to come home on his own and be alone for 15 minutes. He was only 9 years of age, and I had no other support. I really battled with this, because I wanted so much to do this diploma, but because my anxiety came back full on I decided the only way to combat it was to leave the counselling class earlier so I could get him from school, as I always had, and be home with him.

I was good at compromising, I'd been doing it now for almost 10 years because of having to work within my physical limits due to the illness meant I knew how to compromise, and not give up, with things I wanted a lot ...

1994 ...

My Health

Plodding along and now very sure I had this new illness, ME, that I had recently read about; jokingly know by many as 'yuppie flu' and often disbelieved by the medical profession. I found I could kind of control the severity of my symptoms by doing less and by managing what I did with periods of rest and recovery in-between. In reality though, I wasn't managing it at all very well.

I was always spending more energy than I actually had ... living in deficit ...

just like I did with money ... living in debt ...

1995 ...

Got married (see below) ...

My Health

My symptoms were worse than they had ever been. I was now 33 years of age and still chronically sick without a diagnosis. And sadly, by now I had struggled on for over ten years, working part-time for part of the year and leaving when I got too sick to work. I was also juggling trying to get a better education, to ensure future job prospects, for when my son was at high school and I would have to work.

I was just desperately trying so very hard to have some kind of a life ...

And still I had no idea what was really wrong with me. No diagnosis also meant no disability benefits, which I could seriously use at this time. Because as well as being chronically sick I was also chronically poor.

by this time I'd heard of ME/CFS and I wondered if I had it too ...

 

1995 (got married) ...

I got married on 12.10.1995.

Although I was still poorly and unable to live a so-called 'normal' life, I got married in October of this year. You may wonder how we met, because I didn’t go out and I wasn’t living the kind of life where you would meet someone really. But I had started to study the Bible and I met him at one of the meetings I attended in relation to this. He had been previously married, but was now divorced. From the start, my husband to be, knew I was sick and was very aware that I caught and hung on to every virus and contagious illness going round, which mean we would be living our married life accordingly. Something he didn't seem to mind, as he was busy making money and growing his wealth and I was busy with our blended family and trying to get well. Our marriage has always been based on give and take from both sides.

Please note, that being able to get married was only a possibly because of having 'mild' ME/CFS at the time, which was what made the difference. I know for sure I couldn't have married, or even met, someone in the state I am today as I write this (February 2021).

The Wedding

We didn't have a big wedding, just him, me, my boy_1, his dad and step mum, my dad and mum, were the only people who came to the wedding and we all went for a quiet meal at a local restaurant afterwards. The next day he went back to work and I carried on as normal, except for travelling a little further to take boy_1 to school.

we didn't even go on a honeymoon ...

But, like I said before, this kind of give and take seemed to suit us both, all we both wanted was someone to share our lives with, someone who be honour the marriage vows and be loyal and supportive ...

our marriage is based on give and take both ways, and we both have limitations and issues ...

mine being my lack of health ...

his being his need to grow and work ...

My Health

During the first year of our marriage my health wasn't too bad. Probably the 'honey moon' period along with all the adrenaline I triggered daily to continue to pretend to be as normal as I could. But this way of living soon asked for 'payback' and my health plummeted big time. And as usual, it was the migraines that showed my state of health first, as they increased in both pain and symptom levels as well as frequency. I was having them weekly now, they were sometimes lasting a couple of days, and impacting everything we did.

 

1996 - 1997 (getting sicker & pregnant) ...

After our first year of relatively easy married life, the reality kicked in. Either my symptoms got worse or the 'honey moon' chemicals and the adrenaline I'd been managing to trigger were wearing off and I was struggling, more than ever. My biggest struggle was with pain and exhaustion. However, I could often override, or at the very least ride, the exhaustion with adrenaline but the pain was something else. I didn't like to take pain medications and so I tried to ride the migraines and extra pain alone. I'd developed these double whammy migraines where, if my eye pain was migraine, I would feel like I had two migraines at once; my old kind on top of my head, with severe vomiting, and the new kind in my eyes, lasting for months at a time). On top of this I developed a very painful area in my right upper back in the thoracic muscle. This would hurt so much, then go into spasm like cramp and make me want to fall down. But on direct touch of the skin, like in massage, a large area had altered sensation to it, it was semi-numb but extremely sensitive and painful if the tip of my husband's nail touched it. I also started with severe pain in the left side of my jaw, radiating along the full bottom and top jaw and teeth area of the left said of my jawline.

this new face pain, and altered sensation in my upper back, made me again question if I had cancer ...

You surely cannot feel this much pain and it not be serious.

Worse still, I didn't have a diagnosis of anything other than migraine.

Pregnancy

It was a little easier on my body, to be pregnant, this time. I didn't have as many headaches, the lichen planus reoccured but on my legs and in my mouth this time. All the OCD and phobias were also gone. So fortunately for me, the pregnancy overall was definitely easier than the first one, I just needed to take it easy and listen to my body signals. And within four hours of giving birth to boy_2 I was glad to be home again, in my own bed, with my husband, boy_1, and our lovely family life. That said, I'm not sure if things could have carried on had I needed to stay in hospital after this birth.

My Health

The day after the birth I resumed my normal role. Because of extreme tiredness and exhaustion, I started to take my boy_1 to school in my PJs and at the weekends and school holidays he started to spend more and more time with his father in Sheffield.

Although my main health symptoms were pain and migraine I still felt like there was an underlying illness causing these symptoms, an illness linked with my energy levels and my ability to 'do' as much as I'd always done previously.

the former girl I used to be, the girl of pre 1985 was now a very distant sad memory of my past. ...

Life was now very different too ...

 

1997 (second child born) ...

On the 23^rd June 1997, almost two months after my 36^th birthday, I gave birth to a beautiful healthy boy (boy_2).

Within four hours of giving birth to boy_2 I was glad to be home again, in my own bed, with my husband, boy_1, and our lovely family life. That said, I'm not sure if things could have carried on had I needed to stay in hospital after this birth. The day after the birth of boy_2 I resumed my normal role in the family. And from the get go taking care of this child was much harder for me, things were wo difficult, but I really felt I didn't have a choice.

I had to play my part in keeping things running smoothly ...

Because of extreme tiredness and exhaustion, I started to take my boy_1 to school in my PJs and at the weekends and school holidays he started to spend more and more time with his father in Sheffield. I'm 100% convinced he was feeling very pushed aside and neglected. As well as being sicker and having a family to take care of, boy_1 must have felt almost invisible due to boy_2 being very attached and needy and ‘no one else’ would ‘do’ for him. I was his world.

To give you an idea of how this played out. One day an elderly friend of mine had to hold him while I took care of something. He could see me and almost touch me but he cried so hard that he had a nose bleed. The minute I took him he calmed down and eventually stopped sobbing. This was our relationship through each growth stage. I was the only person who he could connect with and respond to.

My Health

On top of my ever growing symptoms and ailments, I now developed altered sensation in my upper back, which caused excruciating pain and meant that just cooking and ironing, or doing anything where I had to lean forward slightly, would send it into flare up or cause a whole thoracic muscle spasm. Initially it was thought I’d damaged it during labour. However, this was eventually diagnoses as fibromyalgia.

My migraines were more frequent and more severe. Typically my migraines were either on top of my head or in my left or right eye. But, on some migraine days I was getting what felt like double migraines. Where I’d have the top of my head kind coupled with a migraine in both eyes. I’ve no idea how I learned to look after a new baby, and my other children, with these horrific new kind of migraines, but I did manage, and we got by all relatively unscathed. When I get them now (writing this in early 2021) I have to stay in bed all day, in the dark, with copious ice packs, all the pain medications I can safely take, with the sickie bucket. Yet, when I had my children to care for and somehow I found the inner strength to do this and keep us all safe. I’d like to add here that my husband has never taken a single day off to relieve me of my mother duties or to take care of me while I’ve been sick.

what a super wonder mum I was ... even though I didn’t realise it at the time ...

Other factors included I was older, I had a new baby and a teenager, every other weekend my husband’s three girls, from his previous marriage, were coming to stay for 3-5 days and nights, with me acting as their main carer. I was cooking proper family meals, doing all the housework, shopping and taking care of everyone but myself.

I was as utterly exhausted as you can get without breaking down and I didn’t have anything left for me. I would sometimes take the kids to school in my PJs or wearing clothes over my PJs to save energy.

I was simply exhausted and extremely sad, it seemed like everyone wanted something from me. And it felt like no one was giving anything back to me.

 

1995 - 2000 (married years) ...

1995 ...

I got married (see above) ...

1996 ...

I was getting sicker & pregnant (see above) ...

In February of this year my dad died. He was only 54 years old, too young to leave us. My dad was the best dad you could ever wish for and I miss him so dearly ... I need to mention him here because he was the only person in my life, at that time, who really believed how sick I was, and he wondered just what I had!

my mother used to comment about how delicate I was and that I needed to harden up…

1997 ...

Sadly, I had to stop my counselling diploma. It seemed like boy_2 didn’t like anyone caring for him, except me. It also seemed like no one else would put the effort in to get to know and like him and so everything was left to me and me alone. No one ever changed a nappy for me or did a feed. Not even when I had a migraine.

Gave birth to boy_2 (see above) ...

I grieved having to stop my counselling course for many years to come ...

there was so much loss in my life ...

My Health

During my pregnancy I was delicate to say the least but I think happiness papered over some of my symptoms and enabled me to enjoy this pregnancy with less anxiety than I’d had in my first. That said, I did get quite sick and had some blistering migraines. I also had a very long lasting chest infection for which I didn’t take anti-biotics, even though the doctor prescribed them. I really wanted this baby to grow naturally without additional medicines and toxins. Maybe the chest infection wasn’t good for him either because he was a very sickly baby until we moved to Cumbria.

On top of all this, not long after giving birth, I also developed some altered sensation in my right upper back. It burned, like it was on fire, but it also felt semi-numb. This was initially diagnosed by a physiotherapist and treated as a labour injury. However since then, it has been diagnosed as fibromyalgia and has spread to other parts of my upper back and limbs.

1998 ...

Struggling so much to keep my head above water. I had a teenager and a baby all the time, plus three other children very regularly.

My upper back was so bad now that I couldn’t manage to make family meals in one go. I had to space the preparation of them out into sections throughout the day. And then have one last blast just before my husband arrived home from work.

I was definitely no longer plodding ... I was dragging myself and my kids along. Married life had made my life, and illness, so much worse.

My Health

Same as ever, just more severe. Migraine after migraine. Pain that some days would stop me in my tracks and I had these double whammy style migraines where I would feel as though I had two kinds of migraine going on in one attack.

Despite the above, I hadn’t yet started taking pain medications ... I would go to bed with the sickie bucket and do only the care of my baby. My migraine and my inability to function was causing tension and arguments were happening all the time as a result of me going to bed to recover.

1999 ...

By this point, I had also started to take boy_1 to school wearing my PJs or with clothes over the top of them, hoping the car wouldn’t break down. School was too far from home for him to walk, plus he had been staying off without permission and had been out on a card that needed to be signed by each class teacher to say he had attended the whole lesson.

My Health

My life was dominated by migraine and pain. As I look back, I’ve no idea how I made it through some days. And still people around me, especially those who should know better, think I’m ok and just moaning, or lazy, when I say how I feel.

I was loosing my spirit ...

I felt like I was drowning and that no one cared ...

2000 ...

I don’t know how I made it through these years ...

Family life, at this time, was very difficult and I felt unloved, uncared for and invisible. I had issues with boy_1 and boy_2 was always sick, and I means always. I think without anti-biotics he would have died he was that unwell.

And we were also planning on moving because of work and personal reasons.

My Health

I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all.

Still no one, medically, really knew what was wrong with me. On top of everything else, I had also developed TMJ and MCS and facial neuralgia. Everything I got seemed to give me more pain!

 

2001 (a diagnosis) ...

It was after moving to Morecambe and registering at a new surgery that I got a referral to Lancaster hospital where I finally received a diagnosis.  The letter I received said:

Dear Denise,
... It was my feeling that when we met that you had nuisance physical symptoms, but without a serious medical cause to underpin this. It is possible that you might have a chronic fatigue syndrome or fibromyalgia, but there is no pointer to anything serious ...

At the time I was gobsmacked and really wondered how on earth what I was dealing with could ever have been classed as mild and not serious. I found it offensive.

My thoughts at the time:

It seemed to make a mockery of the pain I was feeling almost every day ...

When we met that you had NUISANCE Physical Symptoms ...

It is POSSIBLE that you MIGHT have a Chronic Fatigue Syndrome or Fibromyalgia Syndrome ...

There is NO pointer to ANYTHING SERIOUS ...

I now, in 2021, know different - I realise I was mild, at the time I was diagnosed, it just seemed and still seems like the most ridiculous way to explain something that impacts every aspect of your life. Its life impact is never mild, even if the level of ME is, and it is always serious. I have now been ill for more of my life than I have been well and its impact on my life experience most certainly hasn’t been mild or not serious.

I now had to move on from this ... with medical profession, at that time, all having the same attitude towards ME; like it was no real big ...

but it was very much a big deal ...

 

2000 - 2005 (married years) ...

2000 ...

... (see above) ...

My Health

... I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all. I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all ...

2001 ...

I got a diagnosis (see above) ...

We moved to Heysham, in Morecabe, as a family. Things got really tricky between boy_1 and my husband, which culminated in my husband throwing out boy_1 at the tender age of 16. FML. In fact things were difficult all round. This was such a difficult time for me. I was getting sicker and so was boy_2.

Not long after the move, away from everyone I knew, my husband lost his job and started to work away from home. I got sicker. Boy_2 got sicker. My husband came home weekends to get his washing done and that was it. I was alone again.

It was at this time I got considerably sicker and was finally diagnosed with ME.

My Health

I was now seriously poorly. I couldn’t get out of bed. I couldn’t get up or down the stairs. And I had no one, not one single person, to help me. As I reflect back, I think physically and emotionally this has to be one of the hardest and loneliest times of my life. But, it taught me how to be alone again, and how to stand on my own two feet again.

2002 ...

I am a grandmother ... in September of this year boy_1.1 was born to boy_1 ...

My Health

I think it was around this time that I realised I had pain everywhere. I had so much pain, and most of the time too. I was exhausted but couldn’t sleep. I wasn’t eating but was gaining lots of weight. I wondered, probably for the second time now, did I have cancer and it was being missed.

you know deep inside that you can’t feel this unwell and not be seriously ill ... but the doctors just kept telling me otherwise ...

L E A R N

T O

L I V E

W I T H I N

Y O U R

N E W

E N E R G Y

E N V E L O P E

which is just so f**king hard ...

2003 ...

Early 2003, boy_1 moved back to Manchester with his GF and boy_1.1. So we put our house on the market and late spring, early summer I moved to Cumbria with boy_2 to live back with my husband in our static caravan.

My Health

My health was terrible. I would now have week long migraines. In fact, I seemed to literally go from one migraine to the next one ...

2004 ...

It was June 2004 when we moved into a lovely house in a lovely village called Allerby. The move was hard but boy_2 started to recover and settled, he even went back to school at this time.

My Health

My health was terrible. I would now have week long migraines. In fact, I seemed to literally go from one migraine to the next one ...

2005 ...

Towards the end of 2004 we moved again to a village, called Hayton, just a couple of miles from Allerby.

All the moving was really taking its toll on my health. This is the point in my illness timeframe that I really stopped doing things. I’d take my son to school, come home and rest until tea time. And I was still getting sicker.

My Health

I was now in the moderate group. I was telling people and crying out for support and help. But my cries were going unheard. I also went into early menopause. Migraine and pain was not something I lived with on a daily basis.

I had now been ill now for a lot more of my life than I had been well ...

Read that again and imagine what that actually means in reality ...

 

2005 - 2010 (married years) ...

2005 ...

Towards the end of 2004 we moved again to a village, called Hayton, just a couple of miles from Allerby.

All the moving was really taking its toll on my health. This is the point in my illness timeframe that I really stopped doing things. I’d take my son to school, come home and rest until tea time. And I was still getting sicker.

My Health

I was now in the moderate group. I was telling people and crying out for support and help. But my cries were going unheard. I also went into early menopause. Migraine and pain was not something I lived with on a daily basis.

I had now been ill now for a lot more of my life than I had been well ...

Read that again and imagine what that actually means in reality ...

2006 ...

I’m a grandmother again ... in June of this year girl_1.1 was born to boy_1 ...

Towards the end of the year, September to be exact, we moved to Moresby, which is in Whitehaven. The move was to make things easier for us all. Closer to school for me taking my boy_2 to school, in fact it was only a mile away. Closer to work for the husband. A smaller garden. Just hopefully easier all round.

By this time, I am so lost in this illness. And I need to be able to find some personal definition.

And so, in typical ‘pretend you’re normal’ I started an Open University (OU) honours degree ...

My Health

I am now having migraines so frequently that I feel I just roll out of one and into the next one.

2007 ...

Life feels a real struggle and I’m not happy ... and no one sees or understands … I feel I have no one fighting my corner …

My Health

MIGRAINE ... PAIN …

2008 ...

I started working part-time at our local school for children & young people with profound and complex learning difficulties.

I love it.

The work place doesn’t allow perfumes, which is so bloody perfect for me. And the blinds are almost always closed as the children need low stimulation. It works so well for me.

My Health

I love my job. But I am a still often off work loads because of migraines ... I am always being informed how much time I take off sick … and I don’t feel understood or supported by my employers …

2009 ...

Struggling with health issues and I am so unhappy ...

My Health

MIGRAINE ... PAIN …

2010 ...

Carrying on pushing myself to manage my children and work even less part-time for even less of the year.

I’m extremely unwell and still I carry on.

My Health

I am so poorly that for a good few years now I’ve been using the car to take my son to school and to collect him too. Yes, it is only a mile away but I can’t do it any more. I cannot walk the distance and then deal with him and make teas for everyone too.

 

2010 - 2015 (married years) ...

2010 ...

Carrying on pushing myself to manage my children and work even less part-time for even less of the year.

I’m extremely unwell and still I carry on.

My Health

I am so poorly that for a good few years now I’ve been using the car to take my son to school and to collect him too. Yes, it is only a mile away but I can’t do it any more. I cannot walk the distance and then deal with him and make teas for everyone too.

2011 ...

Completed my degree with the OU ...

I am immensely proud of myself ... this is probably one of the only times in my life that I actually feel proud of who I am and what I have managed to achieve despite everything that I am dealing with ...

I have a first class honours open degree (mainly duration & psychology) ...

My Health

Same as always. Daily morning excruciating pain, and relentless migraines.

2012 ...

Being bullied at work ... and so I left because it was devastating for me ...

My Health

Same as always. Daily morning excruciating pain, and relentless and never ending migraines ...

2013 ...

Paid to have treatment via The Optimum Health Clinic, which was soo expensive and really didn’t make any difference whatsoever.

My Health

I’m back seeing a lovely lady at the Keswick ME clinic. She’s as worried about my health as I am. I just can’t stop triggering adrenaline in order to be able to carry on and it’s making me sicker by the day.

2014 ...

Don’t ask why, but I got another part time job... I really am struggling to know what to do, what I can do, and how to have a life that feels worthy.

I know why I have done this again, but it’s extremely personal and I don’t feel I can share it yet ...

My Health

My health is appalling and it’s causing issues within my relationship too. I am accused of not doing enough. I am accused of being lazy. So many negative slurs are thrown at me.

But, I devastated that I am always ill. I am taking pain medications by the score. And I somehow feel that getting a job is the answer. All it has done is increase my migraine frequency.

I give up …

2015 ...

We bought a plot of land, for building on, in a beautiful village on the edge of the Lake District national park.

In April we bought a plot of land, in a beautiful village on the edge of the Lake District National Park. The plot originally came on the market in 2008, but we couldn’t afford it then. However, after some serendipitous manoeuvrings we could now afford it and so we bought it.

My Health

I was working part-time at our local surgery and having more time off than in. So I gave the job up in order to try to recover some.

I applied for PiP again, but I was refused again. No idea how this can happen. I am so sick and I need so much help.

 

2015 - 2020 (married years) ...

2015 ...

In April we bought a plot of land, in a beautiful village on the edge of the Lake District National Park. The plot originally came on the market in 2008, but we couldn’t afford it then. However, after some serendipitous manoeuvrings we could now afford it and so we bought it.

My Health

I was working part-time at our local surgery and having more time off than in. So I gave the job up in order to try to recover some.

I applied for PiP again, but I was refused again. No idea how this can happen. I am so sick and I need so much help.

2016 ...

We had wanted to build this year but because of the floods at the end of 2015, all the local builders were busy fixing flooded homes as a priority.

My Health

In my usual typical style I got myself another job, this time as an appropriate adult on call, where I could pick my own hours and days. I absolutely loved this job. But I only managed about 6 months of working 4 hours for 4 days a week. Again I just couldn’t do it due to sickness, migraines and utter exhaustion.

I applied for PiP again, and was again refused.

2017 ...

Our build started in April this year and we had to travel every single night to check on things. Very exciting but absolutely exhausting. 

My Health

During the build time I didn’t work.

I applied for PiP again, and I was refused again.

By the time we moved in to our new build I had applied for another very part-time job, just 2 days a month as a SPIP practitioner.

2018 ...

I’m a grandmother again ... in November of this year girl_2.1 was born to boy_1 ...

We moved into our new build home in March this year.

I started my new job, as a SPIP practitioner, the April after moving in our new home. It was a very part-time job, just 2 days a month. Very sadly, after 6 months I had to leave because I was seriously unwell.

My Health

I had now made myself severe. I couldn’t do anything. I barely got dressed. Whenever I had a bath and washed my hair I would end up with a severe migraine the following day. I started going from the bed to the settee and that was it I could do nothing else. This is how I spent the rest of the year.

At this devastating time of my life, the only friend I had ghosted me. Part of me was devastated but on reflection she didn’t really understand the illness or how it was impacting my life and I know she felt things were unfair because she occasionally visited me but I didn’t visit her. She obviously didn’t understand how sick I was and now, in 2021, I’m relieved she is no longer in my life.

2019 ...

friendship lost : best friends no more and never ever again too ...

My Health

I started and continued the year as 2018, going from the bed to the settee. Every time I tried to do something I made myself sicker. And I’m talking about basic things like trying to wash daily, or get dressed daily. I could not longer do the basics in order to feel like a woman. My health deteriorated so badly that I don’t go out, I don’t get dressed.

I applied for PiP again. This time I was awarded enhanced for both components.

I no longer live I am barely alive ...

2020 ...

the year the whole world got to stay home too (see below) ...

My Health

My health has stayed severe. I haven’t improved by not doing anything and when I try to do things consistently, like get dressed a few days in a row, I end up in bed with a severe migraine. It’s just not worth it. The price is much too high a price to pay for the activity. And so I only get dressed for medical appointments. I try to bathe weekly and wash my hair when I bathe but sometimes I just can’t do it. I can’t even manage to brush my teeth twice a day without payback (known as post exertional malaise (PEM)). Some days, I do stay in bed but when I can I get up and lay on the settee instead. I know it’s just geography but it makes me feel a bit more normal. Whereas, staying in bed all the time makes me feel proper sick and scared.

I have only seen my youngest granddaughter (born in 2018) 4 times in person. My older granddaughter (born 2006) iMessages me and we sometimes chat. But I’ve missed out on so much time with them because of this illness. My life has become very limited and small.

this illness has stolen so so much from me ...

All of that said, having my husband home due to lockdown has been a real blessing in disguise for us both, but especially for me.

 

2020 (the year the whole world got to stay home too) ...

The year when the whole world got to stay home too ...

but perhaps the most undefinable year I’ve ever lived through ...

For so long, people have been telling us ‘the chronically sick’ how lucky we are that we get to stay at home all day.

Now, in 2020, they too got to stay home too.

And did they like it?

Did they f**k!

I’ve never in the whole of my life heard so much bloody moaning from people who ironically thought that we, the chronically sick, were lucky because we got to stay home all the time. And now they had to, well it now became an entirely different story. And to pointedly note, they weren’t even sick. They could still wash and bathe, make meals for themselves, clean their houses, garden, decorate, play with their children, listen to music and watch TV and even communicate with people who they live with, or chat on the phone or even gather together, in groups, online. They could actually do whatever, whenever, they felt like it; the only rule was it had to be done safely. They could even exercise, or go for a gentle walk as a form of exercise, if the fancy took them. Things, that although we get to stay home all day, most of us can’t do. And haven’t been able to do for such a very long long time. Things the ‘well’ are obviously still taking for granted, otherwise they’d have begun to appreciate such abilities as well as gaining some empathy and understanding for us regarding just how difficultly soul destroying having to stay home all day, with all the nuances that go with being sick, can be. And furthermore if they were, sadly, furloughed, at least they got 80% of their income for doing nothing. Or even worse still, if they lost their job, they could at the very least, after COVID and lockdown, look for work and be able to earn again. For years many of us have been unwaged, and without social assistance too, but unable to earn or look for work so we could earn a living.

for myself, just to be able to take basic care of myself, financially and physically, would be enough ...

lockdown for me ...

the good ... many people have been able to book inwards and transfer this enlightenment to the situation of those who live with chronic illness ... this has been a wonderful thing for us ...

Lockdown has been extremely beneficial for me because it’s allowed my husband to see just how very sick I am and now I have him in my corner, fighting with and for me, which is extremely powerful. Because of what he’s seen and been able to comprehend he has become so much more supportive and helpful. And dare I say, he now believes just how sick I am. Whereas previously, I think he thought I was exaggerating about how bad my days were because he would see me after I’d triggered adrenaline bursts in order to make tea for when he got home from work.

the bad ... some continue to deny the reality of ME/CFS and now COVID too, which for some seems to be developing into a Long-Covid (long-covid seems to be simply a more acceptable name for ME/CFS or maybe I can call my illness Very Very Long Glandular Fever and get much more recognition than when I say I have ME) ...

unenlightened covidiots is what I’d call them!

That said, for me, there have also been some non beneficial things to come from lockdown ...

to be continued ...

the ugly ... worse still, some actually believe that they have cured their souls from ME/CFS purely by exercise or something they’ve done within their own willpower ...

f**king f**kwits is the only name that comes to mind ...

to be continued ...

 

2020 - 2025 (married years) ...

2020 ...

perhaps the most undefinable year I’ve ever lived through ... (see above for my personal views on 2020)

My Health

Just getting worse by the day ...

2021 ...

The year started off with the UK leaving the EU and the whole country still in lockdown, with the government allowing movement on the just gone Christmas Day only.

Lockdown still works for me because it means my husband is still working from home, which is wonderful because I’m rarely alone. Plus, he makes the bed on days when I can’t or when I need a break, which is every single day right now. He also prepares and cooks tea every night, which is usually the same meal, but this is because it’s all my digestion can cope with and so works well for me and doesn’t seem to mind either. On the whole, I can’t eat breakfast or lunch. And most importantly, he is there if / when I need him urgently. I think I can safely say that we would both be extremely happy to continue living like this for the foreseeable future.

My Health

Despite having my husband to help, I’m still extremely ill every single day. I wake up with headaches daily, often migraines, which can be unbearable. Even though, I sleep most nights, the exhaustion is indescribable. I only get to brush my teeth and come downstairs because of sheer determination. I change my pyjamas every other day. I have a bath less than once a week and I try really hard to wash my hair weekly too, but this does not happen every week due to how poorly I feel every day. I may get up and go downstairs and lay on the settee most days but this is just geography and so that I can be closer to company, in the form of my husband. That said, I could definitely be classed as bedridden.

I started the year with poor health and ended it even poorer. In the first half of the year I’ve lost my ability to sit upright for longer than 10 - 15 minutes without severe PEM and I can no longer make the bed (straighten the bottom sheets, fluff the pillow, and shake the duvet) without having to get back in it.

As the year is coming to a close I can honestly say that I have got sicker and sicker and I am closing the year with fear of how poorly can I get and what can I end loosing.

2022 …

…

My Health

...

2023 ...

My Health

...

2024 ...

My Health

...

2025 ...

My Health

...

 

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