Welcome to the half-life!
Hi, my name is Becky and I have Chronic Fatigue Syndrome.I was diagnosed three years ago, but on reflection, I feel like I have been suffering for a lot longer, just didn't know what it was back then or that the chronic tiredness had a name.
In the years before I was actually diagnosed I was suffering from recurrent ear infections, tonsillitis, swollen glands and migraines. I thought this was just me, my body has always struggled with glandular illnesses ever since I had glandular fever in my twenties.
However, being one of those people who never give in, I just carried on as best I could, taking a few sick days now and again from work and feeling dreadfully guilty about it! I raised my three children on my own, so working a full time job was necessary to provide for them, plus overtime when it was available. I loved my job, loved the social life work brings; the evenings out with the girls, the faces you meet at work, through interacting with clients, meetings, generally being busy and alive! I worked in the care industry so never a dull moment, always a friendly face, and the laughs we used to have.....oh the laughs! I miss that!
In the months before I got sick, I seemed to be suffering from constant aches and pains, my neck, my arms, legs, fingers.....the pain moved around, so one day I would have excruciating neck ache, to the point where I couldn't move my head, the next day my legs would ache or my arms, or both! I found I was always on pain killers, paracetamol and codeine combined were my drugs of choice at the time.
My job was quite a stressful one, although I enjoyed it and loved the challenge but I found that after work in the evenings, by the time I got home I would feel tired. At first. Tired I could cope with. A cup of tea when I got back, take the dog out, chat to the kids, wind down before cooking tea...all normal to me, after all, I would have had a stressful, busy, but productive day. Some nights I would be doing out of hours duty on the phone, from home, which was fine, unless somebody went sick, then it would get busy!
But then something crept up on me, a kind of exhaustion. I would come home and have to lay on the sofa until I could muster up the energy to carry on with the day. Walking the dog became something I would have to delegate to one of the kids, same with cooking tea, or more frequently, ordering takeaway! I found I was getting pains in my chest if I was feeling stressed out, I couldn't sleep properly, waking up in the morning was getting harder. The aches, pains, my body would feel heavy, like I had to drag it around.
Then there were the migraines. Now these had started some years ago, in my thirties. I thought that they were due to me constantly reading and studying as I was doing a psychology degree at the time, so spent a lot of time with my books, and on the computer writing essays, etc. I found my eyes were extremely sensitive to light, especially that bright white sunlight, found on dull days, or after heavy rainfall. It felt like the backs of my eyes were being pierced, the pain incredibly intense, which would last a few days. I would feel sick, dizzy, and the only thing that would help was laying down on my bed, a band covering my eyes, dark room, no noise. Difficult when you have three kids in the house, but I managed somehow!
The migraines got worse when I started working night shifts at a nursing home but I had to work, had to earn money and one thing about all the women in my family, and down the ancestral line, is that we are all strong, hardworking women, who never give up! So I sucked it up and carried on! As long as I had painkillers, right?
So, coming back to the aches and pains, one of my colleagues had suggested that I go and try a Shiatsu massage for my aching body, so I booked one. No harm in trying, and I would try anything to feel normal again. When I look back at this event in my life, I sometimes wonder if, had I not had a shiatsu, I wouldn't have gotten so ill? If I could turn back time, would I do something differently? I'm not suggesting in any way that having a shiatsu massage is dangerous and I'm sure that millions of people use shiatsu as a treatment that they find wonderful, however, the following day after mine....that was it!
I couldn't move, I was in so much pain! It seemed like the floodgates had opened and everything hurt, I couldn't move my neck or head, I had the migraine from hell and I felt extreme exhaustion, to the point where I was confined to my bed! But the worst thing was, it felt as though I had a gaping hole in my solar plexus area, as though there should have been a plug there and it had been pulled out so that all my energy had literally drained from my body. I couldn't even stand upright, on the occasion of getting to the toilet from my bed, all I could do was slowly crawl and hope that I didn't pee myself on the way there!
That was three years, three months and seven days ago!
By this time, my two older children had flown the nest and had lives of their own, so it was just me and my youngest child at home. He was thirteen then, and my little saviour. He'd bring me cups of tea, walk the dog, cook tea, (although we lived on convenience foods for quite a while) and kept me company when he wasn't at school. I knew he worried about me as I'd always been the strong one, in charge and who everyone else relied upon, and now I had to rely on him and I hated the fact that one of my kids had to look after me! It wasn't fair to him, having to be the stronger one at such a young age. His school was brilliant as they ran a young carers club, supporting children who had to look after a family member, so I was grateful when they offered support and a great counselling service to youngsters too.
I must say I was in denial of being ill for quite some time, even though I was bed bound (sometimes sofa bound if I could make my way downstairs) I hated being stuck in bed, out of control. I couldn't read, write, watch tv, think or even speak properly due to not having the energy to do so. I felt deeply depressed, even suicidal at times (although I hate to admit that fact!) I thought everyone would be better off without the lead weight that I had become, the longer the sick days, months dragged on the more depressed and jaded I became. I felt guilty for feeling depressed and tried to hide it from my son, but that took energy, energy I didn't have. I slowly put on weight, due to inactivity and my body's metabolism slowing right down, my doctor put me on tramadol for pain which zoned me out, my body temperature couldn't regulate, so I started HRT. At one point, for two years, I was taking 21 pills a day!
I felt like a zombie, stuck in a cycle of sleeping, taking pills, feeling alone in all of this and trying to protect my son from it, but knowing he was getting sucked in anyway. As I couldn't work, I had one year on sick pay which was £85 a week at the time so I also had to try to muster the energy to claim some help for rent, food etc. I found coming up against the whole benefit system scary, as they kept telling me that I wasn't entitled to any help at first, then after providing proof of my illness in the form of a sick note from my doctor, they started helping me with rent but said I should be able to live on £85 a week!
My rent was a lot more than the amount I was entitled to so most of this £85 a week went towards making the payments every month leaving little if anything left for food and bills every week, thankfully my parents bought us food, otherwise we would have been starving!
I realised that we couldn't go on living like this, and I certainly didn't want to become a financial burden to my parents, so I decided to start looking for somewhere cheaper to live. When I look back now, I don't know how I managed to move house and deal with all the financial issues when I couldn't even stand up properly or for very long before feeling exhausted again. My older kids were brilliant on moving day, travelling down to help move furniture etc. I had found a tiny (I repeat....TINY!) cottage to live in. I negotiated the rent down as this place had been on the market for quite a while, and I presumed that the reason why it had remained vacant for so long was because it was TINY! I had to get rid of so much furniture before we moved in, but we've been here for two years and it's a roof over our heads, plus they accepted pets which was a bonus as I would not have parted with my dog under any circumstances!
A year later the benefits crowd wrote to me saying that they had made a mistake with my claim and owed me money! Well, well! What a surprise!
All this had taken a lot out of me, moving house, financial lack, trying to make ends meet, worrying about how my son was coping with it all, resigning myself to illness, feeling defeated, isolated and alone. These were the zombie years, living a half-life. I had a knack, in the past, of always managing to deal emotionally and physically with any problems that came up in my life, I was a keen student of life coaching, psychology and forward, positive thinking. But these days, it was as though the stuffing had been knocked out of me. Without the energy to think or write I couldn't map my way out of this one. I had no clue as to how long this illness would go on for, there was no cure, I felt like I had hit a brick wall.
