Presentation given at Raynaud's & Scleroderma Annual Conference in Chester - 25th Sept 2010
My Story So Far.....
Hi my name’s Nicki Hunt, I’m 33 years old, I’ve had Raynaud’s for over 13 yrs and was diagnosed with Scleroderma 10 yrs ago. And I’m petrified! I’ve never spoken in front of a crowd before, so please bear with me and my nerves!
When Anne first asked me to do this presentation my immediate reaction was ‘Really?? Why me?? What have I got to say of any interest??’ I count myself as one of the lucky ones so it took a little while and persuasion from friends, to realise that actually, I have been through a fair bit over the years and I do deal with stuff every day but it's just become part of me and everyday life. But to some this may all be new and maybe I can help others by just sharing my experiences.
My next reaction was the 'oh god - I don't do 'speaking in front of a crowd!!' panic
My final reaction was 'darn it - I owe her one!' Anne very kindly came to speak at the masquerade charity ball I held for my 30th birthday a few years back and unbeknown to me, she'd discharged herself from hospital so she could get to Essex that night and speak to my guests!! So yes, I do owe her one! But not just for that, I’m also extremely grateful to Anne and her team for their hard work, dedication and achievements. So much research is being done and progress being made because of the association and the funds they raise. Don't get me wrong, there's still a long way to go - there's not many people that know what Raynaud’s and Scleroderma are, let alone heard of them! But that's where we can help; spread awareness, raise some money for the cool million. In the words of a well known supermarket ad 'every little helps!'
So, apart from being asked, how did I end up here, talking to all of you?
I was diagnosed with R 13 yrs ago, aged 20. There’d been a couple of defining moments when I realised my circulation wasn’t quite right. I’d been working for a retail company and had the tedious task of working in a cold warehouse, pre Christmas, for sale preparations, marking down the stock. Everyone else seemed to manage with the temperature, except me. My hands were blue, and so numb I couldn’t hold my pen. Another time was on holiday in California – it was 80 odd degrees in the sun but a slight breeze or the air conditioning would send my fingers and toes freezing cold and blue.
3 yrs later I was lucky enough to have a gp who had the insight to refer me to a Rheumatologist at Addenbrookes in Cambridge, just in case there was something more to my Raynaud's. After blood tests and a capillaroscopy, I was diagnosed with scleroderma. Of course my parents and I had done our internet research and had scared ourselves something silly with what we found, so when the consultant confirmed it, we were devastated. How do you process the fact that you have a chronic debilitating condition that could affect you for the rest of your life, when you’re 23 years old and have all to live for?? I had to tell my boyfriend, my friends, my colleagues.... I wanted them to be aware of what could happen to me but I wanted to protect them too... I didn’t want them to be as terrified as I was.
So first I had the standard tests; a heart echo, lung function and chest x-rays. The results of these were all ok, and as far as I was concerned, I only really had the Raynaud’s to deal with. So I carried on with life, bought a flat, got a new job.... all with numerous fears nagging deep in the back of my mind – what would become of me in the future? How would the disease progress? How will it affect my everyday life?
I was told that every case was different but there were a few paths that the disease generally followed. I was pointed in the direction of the Raynaud’s & Scleroderma Assoc and was told I could meet others in the same boat, but I didn’t want to then. I didn’t want to see or hear what the condition could potentially do to me – that would make it all too real & scary.
2 years later, aged 25, changes in me must have become apparent. The company I worked for were keen to have H&S and the ergonomics team look after me... my fingers must have begun to change, stiffen...and odd things began to happen, silly injuries and other tell tale signs that only made sense years later. Not willing to face any of it, I decided ‘the disease wouldn’t beat me ‘and I went off travelling the world with 2 of my best friends! It was only years after my return that my parents, specialists and friends said they knew it wasn’t the best idea I’d had but they knew they wouldn’t be able to stop me from going.
We managed northern Thailand, Bangkok, Ko Samui, Vietnam and Singapore. It was a fantastic experience, despite my struggles but after 9 weeks I was forced home. I had no energy, my joints and bones ached. I was tired all the time, not hungry, finding it hard to breathe but blaming the humidity. I wasn’t sleeping, and I was losing weight by the day. I couldn’t bend down to put my shoes and socks on, I struggled to lift my arms to brush my hair and I could no longer lift my rucksack. But I didn’t want to go home, it felt like giving in to the disease, failing, my fears were becoming reality.
When I got home to my parents I was a mess; I only had the energy and mobility to sit on the sofa all day – my joints and muscles hurt, I couldn’t get comfortable just sitting or sleeping, I was weak and down to around 7 stone in weight. I could hardly walk or get dressed. After a lot of persuading (because as far as I was concerned I was ‘fine’) I gave in and went back to my consultant at Addenbrookes where I was promptly admitted to hospital. I had tests galore; bloods taken virtually every day, tests for tropical diseases, bone marrow biopsy, muscle biopsy, liver biopsy, ct scans, a barium meal, endoscopy, to name but a few. No stone was left unturned. Sticky blood was discovered, I was also diagnosed with Lupus, myocytis (inflamed muscles) and pernicious anaemia (vit b12 deficiency), finally concluding: mixed connective tissue disease.
I was in hospital for 6 weeks; my friends and family were amazing. I was never a day without visitors despite the one hour drive there and back through wind rain and snow. Again, it was only a long time afterwards I found out that they weren’t sure whether I would make it out of hospital at all. They had to come.
A drug plan was set. I was given intravenous steroids over 3 days to kick start me back into action, and a simple walk down the ward corridor, to the bathroom, became my greatest achievement in months. I started hydrotherapy to help build my muscles and gain strength. I went home with a mountain of medications, a cocktail of steroids, immuno-suppressants, blood thinning pills, pills to help my digestion and supplement drinks.
I was issued with a disabled badge and ferried around in a wheelchair for a while. I was back living with my parents, so they could help feed me up, look after me and generally do all they could for me. I began physio for my hands and occupational therapy to provide me with aids to help with everyday life. I was taught how to try and balance my life-style but my recovery didn’t happen over night - it was a long slow process and a lot to deal with. My life was never going to be how it once was.
Unfortunately, as I was beginning to get back on my feet, my boyfriend, of 8.5 years, broke up with me. I was devastated. I’ve blamed myself, I’ve blamed my health, I’ve blamed him but do you know what, it could well be the best decision he ever made. It made me more determined than ever, a kind of ‘I’ll show you’ attitude appeared. I wanted my life to be how it was before the diseases. I wanted to prove that I could still go out, have fun, have a drink, go dancing. And I did, but at a price. My confidence was at an all time low. I used to easily wear myself out trying to ‘prove’ myself; ending up tired and achy, and ultimately pushing myself to the limits. Stress & exhaustion are not positive factors for an already struggling circulation. Ulcers and sores on my fingers became more common, and so did the hospital stays for intravenous iloprost infusions. [Do I need to explain this further? – ask Anne] And as some of you may know, iloprost isn’t a quick fix either - ulcers and sores can still literally take months to heal even after this treatment.
I was in hospital at least 3 or 4 times for iloprost that year but in 2005 it was a little less and I managed to start commuting, part-time, back into London for my job. But there was still the ongoing bore of ulcers, sores, infections, endless antibiotics, lancing of nails, bandaging, not being able to use my hands much, and having to go back to my parents for support.
In 2006 (29) I picked up with a muscular-skeletal virus. It hurt to breathe, sleep, sit still or just about do anything for a good 3 weeks! I couldn't sneeze, yawn, or have a good ole' hearty laugh without sharp shooting pains in my chest (Of course it was my own fault for getting the darn thing in the first place. I’d spent the day sight-seeing in London on an open top bus in the middle of January!) Later in the year, with it not getting a hell of a lot better, there was concern it could be the beginning of pulmonary hypertension, so I was admitted to Papworth hospital in Cambs for more tests and iloprost. Thankfully it was just pneumonia and slight fibrosis of the lungs. But since then it’s been my chest that is my tell-tale sign for over doing it. When I get tired and run down, my breathing becomes shallow and my chest gets tight and uncomfortable.
It was around this time that the R&S Assoc came to a local hospital in Essex and I was introduced to the Broomfield Scleroderma clinic. I could finally have my iloprost infusions close to home – making the hospital stays so much more bearable because it was easier for people to visit.
In 2008 I had a particularly nasty ulcer on the fore finger of my left hand. I’d already had 2 doses of iloprost that year but it hadn’t seemed to help. It got worse, and went black and the pain was horrific, to the point where it was affecting my sleep and concentration. I was admitted to hospital again; more iloprost, antibiotics and now morphine. After several more weeks of excruciating pain and the blackness increasing, I was told there was nothing more the local hospital could do. I was at an all time low again, back at my parents, not being able to fend for myself again, spaced out on pain killers, fearing that I may lose half my finger, whether it be from amputation or just rotting away. The worries mounted up; would it happen to other fingers too at a later stage? What was to become of my hands?
I was sent to the Royal Free to see Prof Denton and his team, where I was taken in for 11 days and a new plan of action was formed; more iloprost, more antibiotics, a stint on statins and a stint on Viagra - which has of course, caused untold amounts of laughs. I was also refered to have an operation on my hand to take away the tiny nerves endings at the base of my finger, so the blood vessels would remain open; a digital sympathectomy. Finally I started to feel brighter, things were being done again, there was a little bit of hope, so I grabbed back on to it! A while after the operation and another dose of iloprost, the blackness scabbed and began to come away. Now I would get the answers to my fears. What would be left under the scab? Would it be hollow? Would I lose my nail forever too? How grim would it look?? 3 months after the op, the scab came away and I was pleasantly surprised with what was left. It’s not unattractive, just a little shorter, bent and got an odd looking nail growing on it.
Since then, I went to see friends in India, which was amazing but guess what? I came back poorly.... I had a bad chest & cough. Xrays came back clear, there was no infection, so it was just put down to the changes in climate, humidity and air-conditioning. The long flights and long internal train journeys probably didn’t help either. But hey it’s all par for the course now.
This year I to tried to escape the British winter but ended up in Spain for their worst winter in 60 years! And of course, I arrived with an ulcer on my ankle caused by my winter boots. I tracked down an English speaking doc who conferred with the Royal Free and I ended up on 4 weeks of antibiotics, and taking a trip to Spanish A&E for x-rays and bloods tests, to check for infection in the bone. Again, this struck a chord – I was gutted that my feet had now been affected like this for the first time – how would it progress? And I also feared being beaten by my health again and having to come home to have intravenous antibiotics....but thankfully it didn’t come to that. 6 months down the line it’s just about to clear up at last!
So that was then, what about now and day to day stuff? This was the hard part to write but it’s been a bit like therapy for me - reminding myself that these conditions affect me every day and are never far from the forefront of my mind. It doesn’t consume me because I don’t let it - I find something else to do, busy myself with friends and family, find myself a project to work on. But there’s no getting away from the fact that with my now wonky misshapen stiff fingers, most simple things have become a bit of a chore.
There are plenty of gadgets available to help with buttons, undoing jars, chopping & grating food, getting plugs out of sockets but there’s many other simple things that can be taken for granted – trying to use the latest touch screen technology, trying to grip coins and push them into the car park money machines, trying to flush the loo using those push button flushes – you know the circular ones you have to push inwards or downwards – who invented them??? I struggled filling the car with petrol, because I can’t squeeze the pump, but dad’s just made me a great little gadget for that As for putting the butterfly backs on my ear-rings, that can take minutes rather than seconds, providing I can hang on to the darn things at all. Trying to get your cash card out of the hole in the wall, can also be tricky, with or without gloves on. As for reaching into my bag and trying to avoid knocking my overly sensitive fingers with anything hard or sharp – that’s impossible! I could go on forever with examples....
We learn to adjust though, it takes time and can be frustrating but we do it because we have to. I always find it amazing that I can still type reasonably fast. Every one of my fingers has had an ulcer at some point but where those fingers can’t take the touch of a key for weeks on end, another one seems to take its place.
I feel like I’m slow at everything now. Getting dressed, going to the loo, eating my dinner! I have gotten a lot better at asking for help though; asking strangers to open a bottle of drink for me and to the point where I’ve even asked a taxi driver to undo the back of my dress when dropping me home after a wedding – I’d have had to have slept in it otherwise! My friends will automatically take my bags from me, and are ready to do up the fly and button of my jeans when necessary. But they still call me a nightmare because I am a little too independent for my own good at times – they would much rather help than see me struggle. But I like to struggle, and then ask if I have to!
So what have I learnt?
Don't hide away from these conditions, talk to people, be honest, and tell them how you feel. I always thought that by expressing the way I felt was moaning but you know what, we have a right to say how it is! Explaining what the diseases do and how they make you feel will help people to understand.
They may never fully comprehend I go through as I open the fridge door or prepare to step inside a supermarket. Or how frustrating it can be just trying to put on a pair of tights but unless we actually explain when we're asked how we are, or what's happening, how will they ever know?
I bet we've all used the standard 'I'm fine' line, which I'd say is perfectly ok to say to strangers but not to friends and family. Sometimes it helps to be honest, to explain if you're not fine and tell them how you feel. But don’t get me wrong, I still do try to protect my friends and family to a certain degree. I hate them worrying.
Admitting you need help in any way or seeking out an ‘outsider’ to talk to, like a counsellor or psychotherapist, is not a sign of weakness, it’s a sign of strength and courage. If talking doesn’t completely help and you need anti-depressants to see you out of a bad patch, then there’s no shame in that either. In my experience, seeing my psychotherapist is the best thing I've done and I've tried all sorts of things in the past! Crystal healing, yoga, acupuncture, flower power, reflexology, etc....but there's nothing like telling someone your fears to make you realise that you are human and some of your thoughts are only natural.
I recognise now that everyone's problems are their own and it doesn't matter whether you think yours are big or small compared to anyone else's, they’re yours and you are entitled to feel exactly how you feel about them.
For a long time I thought R& S defined me, but it doesn't. There’s so much more to me than these conditions. OK I don't ski anymore, not because of the cold, there’s solutions for that, but for fear of falling and further damaging my hands. I don't go on bike rides as I don’t wish to risk death by not being able to squeeze the brakes! I don't play tennis/badminton anymore without the risk of thwarting my opponent with the racket when it slides from my dodgey grasp! But, I can drive, I go to work, but I’m lucky that I can work from home when I need to. I’ve found I’m quite good at baking cakes. It's not easy and can take forever but where there's a will there's a way! I can still go out and party with my friends, I still go on holidays, live my life to the fullest I can. And of course there’s always something around the corner, to test me but I’ll deal with that when it comes to it.
As for relationships; old friends & family are my comfort zone. They know my history; I don’t need to explain myself to them. I sometimes find it hard meeting new people, trusting them. It’s my confidence but I’m getting it back slowly, and you’ll probably think I’m crazy for saying that, seeing me up here talking in front of you!
But someone new? A new man, even... How will they understand all of this? Why would anyone else want my condition to become part of their life?? How will they cope with the fact that I often have indigestion at night and sleep on a hundred pillows?? What will they think of my awkward caresses; finger jabbing with these wonky hands is a given! Without talking these things through with people, these issues can fester and get so big in your own mind. Negativity breeds more negativity, try seeking out the positives. And if you find the courage to share your thoughts with someone, it becomes real and they'll help you to deal with it, in their own way. Just hearing 'why wouldn't anyone want to love you?' can sometimes be just enough.
I’ve just been to Cape Town to organise a work event similar to today’s format but about electronic trading. I knew the 12hr flights there and back were going to be tough and I knew the day of the event was going to be exhausting but on the days I felt rough I gave in to it and on the days I felt good, I explored the city and partied into the early hours!! I’m actually very surprised that my body’s managed to keep going after my crazy weekend. But I now fully expect that after doing this talk, the relief will be immense and my body will crash like a tonne of bricks, but I’d rather live my life as an adventure than worry about it being a threat.
I’ve never really dwelled on the 'why me?s' – it’s just the way it is. I like to think that I was chosen to test my resilience, courage and strength.
I hope I haven’t bored you all to tears with all the 'me me me' talk but I can’t tell you how to cope, or how to feel. I could have easily listed gadgets to help with day to day practical problems, but you can go to the internet for that. Instead I’ve just given you a brief insight into my world and it’s probably been more therapeutic for me than you but if anything I’ve said helps any of you in some small way, I’ll be happy that I’ve done my job.
Thank you for listening.
Hi my name’s Nicki Hunt, I’m 33 years old, I’ve had Raynaud’s for over 13 yrs and was diagnosed with Scleroderma 10 yrs ago. And I’m petrified! I’ve never spoken in front of a crowd before, so please bear with me and my nerves!
When Anne first asked me to do this presentation my immediate reaction was ‘Really?? Why me?? What have I got to say of any interest??’ I count myself as one of the lucky ones so it took a little while and persuasion from friends, to realise that actually, I have been through a fair bit over the years and I do deal with stuff every day but it's just become part of me and everyday life. But to some this may all be new and maybe I can help others by just sharing my experiences.
My next reaction was the 'oh god - I don't do 'speaking in front of a crowd!!' panic
My final reaction was 'darn it - I owe her one!' Anne very kindly came to speak at the masquerade charity ball I held for my 30th birthday a few years back and unbeknown to me, she'd discharged herself from hospital so she could get to Essex that night and speak to my guests!! So yes, I do owe her one! But not just for that, I’m also extremely grateful to Anne and her team for their hard work, dedication and achievements. So much research is being done and progress being made because of the association and the funds they raise. Don't get me wrong, there's still a long way to go - there's not many people that know what Raynaud’s and Scleroderma are, let alone heard of them! But that's where we can help; spread awareness, raise some money for the cool million. In the words of a well known supermarket ad 'every little helps!'
So, apart from being asked, how did I end up here, talking to all of you?
I was diagnosed with R 13 yrs ago, aged 20. There’d been a couple of defining moments when I realised my circulation wasn’t quite right. I’d been working for a retail company and had the tedious task of working in a cold warehouse, pre Christmas, for sale preparations, marking down the stock. Everyone else seemed to manage with the temperature, except me. My hands were blue, and so numb I couldn’t hold my pen. Another time was on holiday in California – it was 80 odd degrees in the sun but a slight breeze or the air conditioning would send my fingers and toes freezing cold and blue.
3 yrs later I was lucky enough to have a gp who had the insight to refer me to a Rheumatologist at Addenbrookes in Cambridge, just in case there was something more to my Raynaud's. After blood tests and a capillaroscopy, I was diagnosed with scleroderma. Of course my parents and I had done our internet research and had scared ourselves something silly with what we found, so when the consultant confirmed it, we were devastated. How do you process the fact that you have a chronic debilitating condition that could affect you for the rest of your life, when you’re 23 years old and have all to live for?? I had to tell my boyfriend, my friends, my colleagues.... I wanted them to be aware of what could happen to me but I wanted to protect them too... I didn’t want them to be as terrified as I was.
So first I had the standard tests; a heart echo, lung function and chest x-rays. The results of these were all ok, and as far as I was concerned, I only really had the Raynaud’s to deal with. So I carried on with life, bought a flat, got a new job.... all with numerous fears nagging deep in the back of my mind – what would become of me in the future? How would the disease progress? How will it affect my everyday life?
I was told that every case was different but there were a few paths that the disease generally followed. I was pointed in the direction of the Raynaud’s & Scleroderma Assoc and was told I could meet others in the same boat, but I didn’t want to then. I didn’t want to see or hear what the condition could potentially do to me – that would make it all too real & scary.
2 years later, aged 25, changes in me must have become apparent. The company I worked for were keen to have H&S and the ergonomics team look after me... my fingers must have begun to change, stiffen...and odd things began to happen, silly injuries and other tell tale signs that only made sense years later. Not willing to face any of it, I decided ‘the disease wouldn’t beat me ‘and I went off travelling the world with 2 of my best friends! It was only years after my return that my parents, specialists and friends said they knew it wasn’t the best idea I’d had but they knew they wouldn’t be able to stop me from going.
We managed northern Thailand, Bangkok, Ko Samui, Vietnam and Singapore. It was a fantastic experience, despite my struggles but after 9 weeks I was forced home. I had no energy, my joints and bones ached. I was tired all the time, not hungry, finding it hard to breathe but blaming the humidity. I wasn’t sleeping, and I was losing weight by the day. I couldn’t bend down to put my shoes and socks on, I struggled to lift my arms to brush my hair and I could no longer lift my rucksack. But I didn’t want to go home, it felt like giving in to the disease, failing, my fears were becoming reality.
When I got home to my parents I was a mess; I only had the energy and mobility to sit on the sofa all day – my joints and muscles hurt, I couldn’t get comfortable just sitting or sleeping, I was weak and down to around 7 stone in weight. I could hardly walk or get dressed. After a lot of persuading (because as far as I was concerned I was ‘fine’) I gave in and went back to my consultant at Addenbrookes where I was promptly admitted to hospital. I had tests galore; bloods taken virtually every day, tests for tropical diseases, bone marrow biopsy, muscle biopsy, liver biopsy, ct scans, a barium meal, endoscopy, to name but a few. No stone was left unturned. Sticky blood was discovered, I was also diagnosed with Lupus, myocytis (inflamed muscles) and pernicious anaemia (vit b12 deficiency), finally concluding: mixed connective tissue disease.
I was in hospital for 6 weeks; my friends and family were amazing. I was never a day without visitors despite the one hour drive there and back through wind rain and snow. Again, it was only a long time afterwards I found out that they weren’t sure whether I would make it out of hospital at all. They had to come.
A drug plan was set. I was given intravenous steroids over 3 days to kick start me back into action, and a simple walk down the ward corridor, to the bathroom, became my greatest achievement in months. I started hydrotherapy to help build my muscles and gain strength. I went home with a mountain of medications, a cocktail of steroids, immuno-suppressants, blood thinning pills, pills to help my digestion and supplement drinks.
I was issued with a disabled badge and ferried around in a wheelchair for a while. I was back living with my parents, so they could help feed me up, look after me and generally do all they could for me. I began physio for my hands and occupational therapy to provide me with aids to help with everyday life. I was taught how to try and balance my life-style but my recovery didn’t happen over night - it was a long slow process and a lot to deal with. My life was never going to be how it once was.
Unfortunately, as I was beginning to get back on my feet, my boyfriend, of 8.5 years, broke up with me. I was devastated. I’ve blamed myself, I’ve blamed my health, I’ve blamed him but do you know what, it could well be the best decision he ever made. It made me more determined than ever, a kind of ‘I’ll show you’ attitude appeared. I wanted my life to be how it was before the diseases. I wanted to prove that I could still go out, have fun, have a drink, go dancing. And I did, but at a price. My confidence was at an all time low. I used to easily wear myself out trying to ‘prove’ myself; ending up tired and achy, and ultimately pushing myself to the limits. Stress & exhaustion are not positive factors for an already struggling circulation. Ulcers and sores on my fingers became more common, and so did the hospital stays for intravenous iloprost infusions. [Do I need to explain this further? – ask Anne] And as some of you may know, iloprost isn’t a quick fix either - ulcers and sores can still literally take months to heal even after this treatment.
I was in hospital at least 3 or 4 times for iloprost that year but in 2005 it was a little less and I managed to start commuting, part-time, back into London for my job. But there was still the ongoing bore of ulcers, sores, infections, endless antibiotics, lancing of nails, bandaging, not being able to use my hands much, and having to go back to my parents for support.
In 2006 (29) I picked up with a muscular-skeletal virus. It hurt to breathe, sleep, sit still or just about do anything for a good 3 weeks! I couldn't sneeze, yawn, or have a good ole' hearty laugh without sharp shooting pains in my chest (Of course it was my own fault for getting the darn thing in the first place. I’d spent the day sight-seeing in London on an open top bus in the middle of January!) Later in the year, with it not getting a hell of a lot better, there was concern it could be the beginning of pulmonary hypertension, so I was admitted to Papworth hospital in Cambs for more tests and iloprost. Thankfully it was just pneumonia and slight fibrosis of the lungs. But since then it’s been my chest that is my tell-tale sign for over doing it. When I get tired and run down, my breathing becomes shallow and my chest gets tight and uncomfortable.
It was around this time that the R&S Assoc came to a local hospital in Essex and I was introduced to the Broomfield Scleroderma clinic. I could finally have my iloprost infusions close to home – making the hospital stays so much more bearable because it was easier for people to visit.
In 2008 I had a particularly nasty ulcer on the fore finger of my left hand. I’d already had 2 doses of iloprost that year but it hadn’t seemed to help. It got worse, and went black and the pain was horrific, to the point where it was affecting my sleep and concentration. I was admitted to hospital again; more iloprost, antibiotics and now morphine. After several more weeks of excruciating pain and the blackness increasing, I was told there was nothing more the local hospital could do. I was at an all time low again, back at my parents, not being able to fend for myself again, spaced out on pain killers, fearing that I may lose half my finger, whether it be from amputation or just rotting away. The worries mounted up; would it happen to other fingers too at a later stage? What was to become of my hands?
I was sent to the Royal Free to see Prof Denton and his team, where I was taken in for 11 days and a new plan of action was formed; more iloprost, more antibiotics, a stint on statins and a stint on Viagra - which has of course, caused untold amounts of laughs. I was also refered to have an operation on my hand to take away the tiny nerves endings at the base of my finger, so the blood vessels would remain open; a digital sympathectomy. Finally I started to feel brighter, things were being done again, there was a little bit of hope, so I grabbed back on to it! A while after the operation and another dose of iloprost, the blackness scabbed and began to come away. Now I would get the answers to my fears. What would be left under the scab? Would it be hollow? Would I lose my nail forever too? How grim would it look?? 3 months after the op, the scab came away and I was pleasantly surprised with what was left. It’s not unattractive, just a little shorter, bent and got an odd looking nail growing on it.
Since then, I went to see friends in India, which was amazing but guess what? I came back poorly.... I had a bad chest & cough. Xrays came back clear, there was no infection, so it was just put down to the changes in climate, humidity and air-conditioning. The long flights and long internal train journeys probably didn’t help either. But hey it’s all par for the course now.
This year I to tried to escape the British winter but ended up in Spain for their worst winter in 60 years! And of course, I arrived with an ulcer on my ankle caused by my winter boots. I tracked down an English speaking doc who conferred with the Royal Free and I ended up on 4 weeks of antibiotics, and taking a trip to Spanish A&E for x-rays and bloods tests, to check for infection in the bone. Again, this struck a chord – I was gutted that my feet had now been affected like this for the first time – how would it progress? And I also feared being beaten by my health again and having to come home to have intravenous antibiotics....but thankfully it didn’t come to that. 6 months down the line it’s just about to clear up at last!
So that was then, what about now and day to day stuff? This was the hard part to write but it’s been a bit like therapy for me - reminding myself that these conditions affect me every day and are never far from the forefront of my mind. It doesn’t consume me because I don’t let it - I find something else to do, busy myself with friends and family, find myself a project to work on. But there’s no getting away from the fact that with my now wonky misshapen stiff fingers, most simple things have become a bit of a chore.
There are plenty of gadgets available to help with buttons, undoing jars, chopping & grating food, getting plugs out of sockets but there’s many other simple things that can be taken for granted – trying to use the latest touch screen technology, trying to grip coins and push them into the car park money machines, trying to flush the loo using those push button flushes – you know the circular ones you have to push inwards or downwards – who invented them??? I struggled filling the car with petrol, because I can’t squeeze the pump, but dad’s just made me a great little gadget for that As for putting the butterfly backs on my ear-rings, that can take minutes rather than seconds, providing I can hang on to the darn things at all. Trying to get your cash card out of the hole in the wall, can also be tricky, with or without gloves on. As for reaching into my bag and trying to avoid knocking my overly sensitive fingers with anything hard or sharp – that’s impossible! I could go on forever with examples....
We learn to adjust though, it takes time and can be frustrating but we do it because we have to. I always find it amazing that I can still type reasonably fast. Every one of my fingers has had an ulcer at some point but where those fingers can’t take the touch of a key for weeks on end, another one seems to take its place.
I feel like I’m slow at everything now. Getting dressed, going to the loo, eating my dinner! I have gotten a lot better at asking for help though; asking strangers to open a bottle of drink for me and to the point where I’ve even asked a taxi driver to undo the back of my dress when dropping me home after a wedding – I’d have had to have slept in it otherwise! My friends will automatically take my bags from me, and are ready to do up the fly and button of my jeans when necessary. But they still call me a nightmare because I am a little too independent for my own good at times – they would much rather help than see me struggle. But I like to struggle, and then ask if I have to!
So what have I learnt?
Don't hide away from these conditions, talk to people, be honest, and tell them how you feel. I always thought that by expressing the way I felt was moaning but you know what, we have a right to say how it is! Explaining what the diseases do and how they make you feel will help people to understand.
They may never fully comprehend I go through as I open the fridge door or prepare to step inside a supermarket. Or how frustrating it can be just trying to put on a pair of tights but unless we actually explain when we're asked how we are, or what's happening, how will they ever know?
I bet we've all used the standard 'I'm fine' line, which I'd say is perfectly ok to say to strangers but not to friends and family. Sometimes it helps to be honest, to explain if you're not fine and tell them how you feel. But don’t get me wrong, I still do try to protect my friends and family to a certain degree. I hate them worrying.
Admitting you need help in any way or seeking out an ‘outsider’ to talk to, like a counsellor or psychotherapist, is not a sign of weakness, it’s a sign of strength and courage. If talking doesn’t completely help and you need anti-depressants to see you out of a bad patch, then there’s no shame in that either. In my experience, seeing my psychotherapist is the best thing I've done and I've tried all sorts of things in the past! Crystal healing, yoga, acupuncture, flower power, reflexology, etc....but there's nothing like telling someone your fears to make you realise that you are human and some of your thoughts are only natural.
I recognise now that everyone's problems are their own and it doesn't matter whether you think yours are big or small compared to anyone else's, they’re yours and you are entitled to feel exactly how you feel about them.
For a long time I thought R& S defined me, but it doesn't. There’s so much more to me than these conditions. OK I don't ski anymore, not because of the cold, there’s solutions for that, but for fear of falling and further damaging my hands. I don't go on bike rides as I don’t wish to risk death by not being able to squeeze the brakes! I don't play tennis/badminton anymore without the risk of thwarting my opponent with the racket when it slides from my dodgey grasp! But, I can drive, I go to work, but I’m lucky that I can work from home when I need to. I’ve found I’m quite good at baking cakes. It's not easy and can take forever but where there's a will there's a way! I can still go out and party with my friends, I still go on holidays, live my life to the fullest I can. And of course there’s always something around the corner, to test me but I’ll deal with that when it comes to it.
As for relationships; old friends & family are my comfort zone. They know my history; I don’t need to explain myself to them. I sometimes find it hard meeting new people, trusting them. It’s my confidence but I’m getting it back slowly, and you’ll probably think I’m crazy for saying that, seeing me up here talking in front of you!
But someone new? A new man, even... How will they understand all of this? Why would anyone else want my condition to become part of their life?? How will they cope with the fact that I often have indigestion at night and sleep on a hundred pillows?? What will they think of my awkward caresses; finger jabbing with these wonky hands is a given! Without talking these things through with people, these issues can fester and get so big in your own mind. Negativity breeds more negativity, try seeking out the positives. And if you find the courage to share your thoughts with someone, it becomes real and they'll help you to deal with it, in their own way. Just hearing 'why wouldn't anyone want to love you?' can sometimes be just enough.
I’ve just been to Cape Town to organise a work event similar to today’s format but about electronic trading. I knew the 12hr flights there and back were going to be tough and I knew the day of the event was going to be exhausting but on the days I felt rough I gave in to it and on the days I felt good, I explored the city and partied into the early hours!! I’m actually very surprised that my body’s managed to keep going after my crazy weekend. But I now fully expect that after doing this talk, the relief will be immense and my body will crash like a tonne of bricks, but I’d rather live my life as an adventure than worry about it being a threat.
I’ve never really dwelled on the 'why me?s' – it’s just the way it is. I like to think that I was chosen to test my resilience, courage and strength.
I hope I haven’t bored you all to tears with all the 'me me me' talk but I can’t tell you how to cope, or how to feel. I could have easily listed gadgets to help with day to day practical problems, but you can go to the internet for that. Instead I’ve just given you a brief insight into my world and it’s probably been more therapeutic for me than you but if anything I’ve said helps any of you in some small way, I’ll be happy that I’ve done my job.
Thank you for listening.
posted by nackynoo77 at
2:51 PM
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