We are at the crossroads between being able to and not. 18 months ago my hips announced to the rest of my body that they’d done their job. They ached at night, no matter how I positioned myself and while it did not keep me from deep sleep, once awake in the early hours around 4 am, I was fitful for much of the rest of the night. Glucosamine Sulphate tablets have made a big difference and nights are almost pain-free now I’ve become a pill popper.
But my problems are nothing compared to Karon’s. She has Scleroderma – ‘Systemic Sclerosis’ (SS), an auto-immune disorder that makes her immune system attack her own body, particularly the more delicate cells of the internal organs. The most obvious effect of this at the moment is that she is diabetic. Has been since she was 16 and though she often wishes she was just ‘normal’, she has learned to cope with it and manages it very well. Unseen and not immediately apparent is the damage the SS has done to her lungs – now only about 65% efficient. In the morning she hacks like a 20 a day smoker and gets short of breath easily – just climbing the stairs makes her puff like she’s run up them a few times.
I could go on but I’m sure you get the picture.
So that’s why the Hase Pino offers so much more to us than a traditional tandem. Karon has the comfort of the recliner but more importantly, there is a free-wheel on the connecting chain, so she can stop pedalling and leave me to it. Traditional tandems don’t usually have this, so both parties have to pedal in sync all the time. On our old tandem she used to have to ask me to stop pedalling if she needed to shift her weight or take a breather. Now she can sit back and enjoy the scenery. Not that she does stop very often. She fights her illness and rarely lets it get the better of her. On hills she seems to sense when I’m flagging and puts in an amazing burst of strength just at the right time. I can feel this and it usually gives me a mental boost too. We’ve only been defeated by one hill on the Hase and have ridden some pretty steep climbs – not fast, maybe a bit wobbly, but we get there.
Karon’s illness has also set us thinking about sponsorship. Nothing decided yet but her problems and related disorders run in our immediate family. My sister was diagnosed with Lupus at 13. Two years younger than me, the doctor’s told my parents to take her away for a nice holiday once she was well enough, as she wouldn’t see her 21st birthday. This was after months in hospital and she only survived because of some strong steroids. At 58 she’s a rare survivor, having had it for so long. Our daughter inherited our defective genes and has fibromyalgia and rheumatoid arthritis – not something you want in your early 20’s. She says she has the body of an 80 year old.
So, no decision on sponsorship, but if we do set something up it’ll be shared between Lupus, Fibro and Sclerosis research and treatment charities. You may think that’s a bit selfish and we thought about the BDA (British Diabetic Association) and cancer charities – Karon’s Dad and my Mum both died before their time because of it, but they are always in the public eye and pretty well funded. Karon and Hannah both take an interest in a Fibro/auto-immune site called ‘but you don’t look sick’ and that phrase sums it up. When Hannah was 21 and before the medication regime she is on now had been developed, I pushed her around Osbourne House on the Isle of Wight in a wheelchair. When she was bad, she couldn’t even get out of bed. At the moment you wouldn’t know she had any problems – except, if you watched her for long enough you would see that she doesn’t run or do anything ‘energetic’.
Whether Hannah’s current state is a result of the steroids and other pills she pops daily or that she’s just in remission, I don’t know. It could go bad again anytime. And how does Karon cope with her problems? Again, she pops loads of pills each morning. Injects herself before every meal and at bedtime. Gets tired way too early and needs her sleep – double what I need. Her heart/lung specialist is surprised that she rides a bike at all, and amazed that she actually rides up hills on it. She has no saliva because her glands have been destroyed by the SS. So without the protection of saliva, her teeth just crumbled away. She has constantly dry eyes and has to use drops because her tear ducts have succumbed too. Almost every time she eats, at some stage her throat closes up in reflex and she just has to wait for it to relax. She has patches of Fibro and has had hydrocortizone injections in both hands and shoulders. My sister’s life was turned upside-down by her Lupus. It’s nearly claimed her several times and because of it and the side effects of her treatment, she couldn’t have children, can’t go out into the sun without being totally covered, has spent most of her adult life in constant joint-pain and has endured several major ops.
Lupus, Fybromyalgia and Systemic Sclerosis are all researched by ‘Arthritis Research UK’. They also help sufferers remain active through pain management and relief, provide information and campaign, raise awareness among both the public and Government. In short, their aim is to make a real difference to peoples’ lives. So any sponsorship raised by us will go to Arthritis Reasearch UK.