For more than twenty years, I had been experiencing some strange symptoms that had started to worry me. I was experiencing pains, twitches, migraines and even occasional difficulty walking. It was occasional and then life would return to normal. I felt concerned, but just got used to getting on with these occasional symptoms.
I would go back to my GP, every so often, to report more symptoms, changing symptoms and new symptoms. Test results would largely be as one would expect; so there seemed nothing to worry about.
Over time, these symptoms increased and, over the last ten years I started to get rather concerned. I wanted answers and yet no medical professional could conclusively offer a diagnosis. So began the more intense process of ruling illnesses out. Test after test after test. It seemed slow and endless.
I was then diagnosed, in 2015, with Fibromyalgia; a chronic illness that has symptoms like those of Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Lymes Disease and Parkinson’s. For me, the ‘Parkinsonisms’ had always been the most prevalent of the symptoms and, to update my readers, as this continued to manifest as symptoms one would expect from Parkinson’s Disease, in June 2017 I was conclusively diagnosed with Young Onset Parkinson’s Disease.
I am one of the lucky ones in that I do not suffer with cognitive difficulty, thus far. Occasionally, I have been known to get a bit tongue-tied. Speech can be difficult. For me, the symptoms have been the ones that relate to pain and mobility difficulty caused by cramps, rigidity, balance problems. I have to resort to use of a walking stick. I was resistant to this, initially, but my stick has become my friend, when I need it. I have developed slight tremor and twitches, but these are all managed with medication and remain largely hidden.
My work as a Counsellor and Psychotherapist has no doubt helped me; for my training has taught me how to manage my emotions and face adversity well, though I am an optimist by nature, anyway.
These days, people sometimes ask me what is a tough day, for me? That is actually rather difficult to answer. There is no one type of tough day.
Is a tough day the time when I fall into my bed and stay there for hours upon hours, holding back the tears while I plead with a Higher Power to stop the merciless pain that is making it feel as though all of the bones in my body are being squeezed, drilled and ignited ready to explode? Yes.
Is a tough day the time when I was driving home from work and felt suddenly like I was going to over-heat, having become very sweaty, so much so that the pain of an immediate, unexpected migraine hit me so hard that I had to pull over into a ditch and vomit at the side of the road, only to stumble back into the seat of my car to vomit over myself as I clung on to the hope that I would not pass out before I could phone for help. Fortunately, my Partner and a dear friend came to rescue both me and my car. Yes, that was a tough day.
Is a tough day the times when I can’t pull on my socks, tie my shoe laces, turn a tap, hold a cup, grip a cupboard door handle, walk downstairs on my feet, walk unaided, hold my toothbrush, press the cistern button hard enough to flush the toilet, press the buttons on the tv remote control, type, write with a pen, butter bread, open a packet of crisps, get up from a seat without agonising pain, roll over to change position in bed, tolerate the weight of my duvet, raise my arms to do anything at shoulder height or over, walk my dogs, carry shopping bags – even just to and from the car, tolerate heat, tolerate light, tolerate noise, tolerate smells or even hold a book up to read it? Yes. Those days are tough.
Is a tough day when I cannot sleep for more than two hours? Is it when I am thirsty and cannot draw up enough energy to move from one room to another so that I can reach water? Is it when my joints become stiff and painful, when my eyes become bloodshot and my vision blurry, when I just need to sleep right then and there – with no warning as if someone has ‘pulled the plug’ or when my speech becomes difficult; slurry as if I have consumed alcohol? Is it when a part of my hands, legs or feet experience an ongoing rhythmic tremor that lasts for hours and hours? Is it when I experience cold that other people feel is a chill, but to me feels like frostbite must surely be setting in? Is it when cold water stings me? Yes. These too make a day a tough day.
Is a tough day still just living life, while all of the above symptoms, and others, are happening to me? Is it when I go to work and appear to look generally well, just like most people? Is it when I sit with a client and succeed in hiding the terrible pain that I am in? Is it when I write my clinical notes and have to use a mix of written and typed format; depending on how badly my hands and fingers hurt? Is it when I use my walking stick as if I am advanced beyond my years? Is it when I smile and say ‘Yes, I’m fine thanks’, but really feel like electric shocks are pulsating through my body? Is it when I wake up and think – ‘Hmmm, what’s going to be difficult or painful today?’. Yes. That all makes a tough day.
Is it looking generally well, able and like everyone else, when all of the above are actually happening to my body? Oh yes, that is definitely tough.
Is it when people jokingly call me lazy for not offering to lift something. When the woman in the Chemist’s responded to me asking her if I could buy a walking stick by saying “Oh, someone like you doesn’t need that…big strong young man like you…” and I felt myself choke up, because everything hurts, because only a short while ago I didn’t need a walking stick, because sometimes just walking is such an effort and it shouldn’t be and because people just cannot see my struggle. Yes, this is a tough day.
The good news is that this is all pretty much hidden. I just look and seem to act much like anyone else. In many ways, that is a blessing. That said, when you feel alone, on the loneliest journey because you truly are experiencing this on your own while those around you, thankfully, are not then yes, that is a tough day.
When you have been careful all of your life to eat healthily and avoid processed foods, chemicals in food and drink items and you find yourself on a long list of prescribed medication to cope with all of the symptoms and then even more prescribed medication to counter the side-effects of some of the medications and you fear what all of these toxins are doing to your long-term well-being. Yes, that is indeed tough day.
When you see the concern of your family and friends, in their eyes, and you know something is wrong with you. That something makes you different from those closest to you. That your illness makes your loved ones feel helpless and even fearful for you. That, too, is a tough day; the worst.
So, in a nutshell – every day is a different version of tough. The great news is that you can, just like me, choose not to let it beat you. Do not dwell on what you cannot do, focus on what you can do and then do that.
I run my own business, I love my work, I continue to study, I love socialising with family and friends and I enjoy gardening, photography, reading and living life to the full. As a Counsellor and Psychotherapist, my personal experience of living with chronic pain has actually equipped me to help many clients learn to live with chronic pain….live fully. Adopt a positive attitude. Adapt your life to fit your limitations. Accept. Then, find the opportunities to learn, to grow, to develop, to enjoy and to live a full and happy life.
A tough day is just that – tough. You can still find things to do while things feel tough, for doing nothing really would be the toughest thing of all. There is always something we can do, no matter how small or insignificant that may seem, it can make a huge difference to how we experience chronic pain.
Become ‘Solutions Focused’. For example, I love to read. Books became too heavy to hold. I now use a Kindle and can read avidly. Bathroom taps were hard to turn. I now have bathroom taps with little arms, rather then round heads, so they can simply be pushed or pulled on days when pain or weakness strike. Here’s a photo of one of them:
Walk through each room of your home and list all of the things that make life feel difficult at home. Then, create a simple plan for change. Move things to where they will be easier; for example nothing too low or too high, nothing too heavy or bulky. Change how you use shelving. Remove floor obstacles. De-clutter so that cleaning becomes easier. Let go of belongings that no longer work for you. Replace unhelpful things with helpful things. Identify and remove hazards.
If you meet me, unless I have a walking stick with me, you will most likely not know that some days are tough days for me. I appear just like everybody else. The purpose of this post is to help people think about hidden disabilities and to inspire people to become ‘Solutions Focused’.
I also wanted to highlight the difficulties that people with disabilities experience, at a time when the Government has cut so much in the way of benefits and support to the Disabled. I am lucky, for right now I can work and lead a relatively full life; although there are difficulties. Not everyone can do so and to think that those who cannot work are having their dignity stripped by increasing cuts to benefits and support is abhorrent to me.
If you have been affected by any of the topics in this post, do post a comment and share your story. Thank you.
(C) Dean Parsons. 2016.