While the onset of my CFS was rapid, the decline from my normal life to being bed bound happened in very small increments. There is a fable about a frog and a pot of boiling water. It goes something like this - if you put a frog in to boiling water, it will jump out. If you put it in cold water and slowly bring it to the boil, it will not perceive the danger and be cooked to death.
During this gradual decline, looking back, I think it was that frog in a pot of water being slowly brought to the boil. At what stage do you jump out? Can you even get out if you want to?
This chapter is the story of how I lost the capacity to do the most mundane tasks one by one. It's the reason to this day that I don't even complain about having to go to the supermarket or do simple chores. While deep down, I always knew I would recover, I still remember what it's like to be completely useless and reliant on others for everything. It's not a nice feeling. Being vulnerable is scary. Being helpless is down right terrifying.
Losing strength and stamina
I remember when I first got sick, I still had that residual physical strength in my muscles. It's funny the things that stick in your mind. When I first moved home, I remember being at Erina Fair one day. I wanted to buy my mother something special for Christmas for taking me back in as an adult and taking care of me. I remember sitting down in the food hall eating chips & gravy (it's a vice, still to this day) and needing to sit for at least 30 minutes before I could get up again and walk back to the car.
Fast forward three months, another memory that's permanently fused in my memory is a 'race' I had with an old lady in a walker!! (I wish I had video, but I'm sure you can picture it yourself). I was at another shopping centre on my way to see my doctor. He was nice and kind and believed me, but unfortunately, really couldn't do much for me. While that's irrelevant to my anecdote, it's a thread that runs through the stories of so many - not having the right help, and it happened to me for the first 3 years of my illness.
Anyway, back to the granny race. We were both walking along a path way towards the doctors surgery - this kind grey haired lady and me. She won. I was actively trying to keep up with her. It was that moment that reality truly sunk in. The decay was truly setting in, and I felt helpless to do anything about it. I had no choice but to rest, and it was this rest causing the problem.
Outings became few and far between
Giving up your independence is tough. As a 20 'something' year old, it's a pretty shitty thing not to be able to jump in the car and zip to 'wherever' to do 'whatever'. I was pretty defiant there for a while, determined not to let this fatigue and lack of strength and stamina get the better of me, so I kept going out.
I developed quite a few hobbies to keep my mind active. One of them was sewing. I bought a sewing machine and an overlocker and taught myself how to become a seamstress. I made business suits to start off with. Then when I realised I wasn't going back to work any time soon, I started to make casual and comfy clothes. One of my joys was to go out and buy the material to make my clothes.
There was a lovely little store about 20 minutes from home who used to sell off-cuts from designer labels. I have always been creative, so walking in to the shop to touch and feel the fabric was a bright light in my life. I got to know the lady who owned the store very well, and she would bring me fabric and tell me who the designer was and what they made from it. I would then zip in to spotlight to buy cotton, zippers, buttons etc and be on my way.
Another moment that's just stuck in my head until the end of time is one such trip in to Lincraft. It's a pretty large store and about half way in, I just couldn't take another step. I looked around, no chairs anywhere. I literally just sat down on the floor, held my head in my hands and breathed heavily until such time as I caught my breath. After a few moments comes the realisation that I still have to get OUT of the shop again. A lot of the finer details are blurry, but I'm pretty sure that was the last trip in there for several years.
Still determined not to be housebound, I just ensured my trips required little walking. The fabric store was tiny and we could park out the front with my disabled parking permit. Yes, by this stage I had a permit (I could not drive, but I was still able to be a passenger) and I was living off welfare. These short trips continued for a while, but they too became too difficult and I stopped. The sewing stopped too, I just didn't have the energy for it. Leaning over fabric, pinning, cutting it out, sitting at the sewing machine, it all became too much.
All of this pre-dates Foxtel, Netflix and even the ability to download video on your computer. One of the last sets of outings I was able to do was to take a trip to the video store. Anyone remember Video Ezy? VHS? Once a week we would go and get videos. I have seen everything Shirley Temple ever made, along with hundreds of other movies. There's only so much Days Of Our Lives, Bold & The Beautiful, Oprah Winfrey a girl can watch.
But still, the time came where I just couldn't do it. The only time I would leave home would be for medical appointments. One last memory that's in my mind forever with regards to this decline was a trip that I took to Centrelink as a part of my Disability Support Pension application. Having to do that was rough. Why? Because the diagnosis to qualify is that your doctor doesn't see you improving in the following 2 years. That's a pretty big blow to the ego.
This was one of my rough days, both physically and emotionally. I had developed some of my chemical sensitivities by then and the appointment was 30 minutes from home with quite a walk from the car to the office. When you look at it on a map, it's really not very far. For me, it felt like a marathon.
By the time I got in the office, my breathing was laboured. I was out of breath, found it very difficult to talk and must have looked and sounded dreadful. I didn't even have the strength to sit upright. I vaguely recall slouching back in a chair or slumping over. It's a little blurry now, but I remember only getting 3 or 4 words out a time before having to stop to breathe. This was going to take quite some time to recover from.
Regardless, like the trooper I was, I got through it, probably the slowest interview they had ever done. The staff were magnificent. They apologised for me having to come in and rubber stamped my application pretty quickly. I was officially a pensioner with no immediate sight of ever being anything else. I was 'in the system'. Don't get me wrong, I was extremely grateful. Many people struggle financially. I was able to live at home and use all my money to pay for medical bills and food.
For quite some time, that would be the last substantial trip out.
Housebound to Bedbound
I want to start this section off by saying that there are so many people that were worse off than me. If you are one of them, my heart is with you. While I wasn't truly Bedbound by the traditional definition, I wasn't far off it.
My world was the short walk from my bedroom to the bathroom to the dining table and sometimes outside to sit in the sun. I spent the large majority of the day sitting propped up in bed watching TV, or laying down sleeping. I did buy a computer around the time that Windows 95 was invented and spent an hour or two a day talking to others with CFS online from all around the world. This was my emotional life saver. I taught myself how to make websites and put one up about living with CFS & MCS (it's how I snagged my husband the skills I needed to start this business). I couldn't sit up at the computer for more than an hour or two. That was my bedbound status. So not technically, but I was pretty damn close.
The lowest point came when my muscles had atrophied significantly and my blood pressure was 78/60. I was lightheaded pretty much all the time. It was at this stage that we were wondering just how much more I could take before my heart would just stop beating. I did fear for my life for a period of time. It was not pleasant. By this stage, walking to the bathroom was not a simple task. The plastic toilet seat would irritate my skin, so I would lift it up and sit on the porcelain. Do you know how uncomfortable and cold that is? When you're almost at rock bottom, it's just one more thing to deal with. The woolen carpet in the house made my feet itch, so I would walk around with shoes on. No big deal, just a little bit annoying. I had developed a sensitivity to the taste of nickel (found in stainless steel) and couldn't bear to have cutlery in mouth. I would eat with my fingers or a plastic takeaway fork. I was living on 'the white diet' (the subject of a later chapter) and terribly malnourished. I did not realise this at the time.
The lowest point involved this orange plastic stool. It lived in our shower. I was down to showering maybe once or twice a week. It was a significant effort to get in to the bathroom, get undressed and bathe myself. Washing my hair was out of the question. I didn't have the energy for it. So, at the age of 26, I sat naked on this plastic stool and my mother came in and washed my hair because I did not have the strength to lift my arms above my head for long enough to wash my hair. This still brings tears to my eyes when I type it.
How much worse could this possibly get? Both my mother and I were afraid. It was around this time that my mother happened to be listening to the radio and they were talking about a CFS research team at Newcastle University. My mother called them. They recommended a doctor to me who was working with them at the time. She had CFS herself in the past. My appointments would last an hour or more. She believed me. She could see the damage. She understood. She put me on supplements. She did loads of tests and finally came up with my diagnosis and started my treatment, a 12 month course of antibiotics to kill the bacterial infection Rickettsia, which was the underlying cause of all my health problems. Had it been found earlier, my muscles would not have atrophied, I probably wouldn't have developed MCS, or gut health issues, or the sluggish liver that I now live with. Life would have been very different indeed. Who knows, I don't have a crystal ball. I am grateful that we found it and found my way out. Far too many don't.
Had that radio not been on that day, if my mother had not picked up the phone to call the University, there's a very real chance I would not be here and you would not be reading this.