I was chatting to someone the other day and happened to mention that I now had to use a wheelchair if we were going out for the day or if I had to do any activity that may involve any length of walking. At first they thought I was joking and then they were quite shocked to realise I wasn't and that I have actually been using my wheelchair for over eighteen months or so now. I think they were shocked because, as people always tell me, I look like I am well and you can't actually see there is anything wrong with me and as I have no outward physical disability. I am quite capable of walking for short, little bursts without too much of a problem. So when my friends see me pottering round at home, making a cup of tea or two or helping to prepare a meal all looks perfectly normal. That is because I am doing a lot of sitting in between, pacing myself and I am comfortable in my own environment; I also don't do too much beforehand then I can enjoy myself while friends are with me and not feel too tired.
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| Try going to Cambridge and not seeing a bike! |
So my friend was quite shocked to hear I used a wheelchair and I could see in her face that she felt quite sorry and she remarked how that must have been a hard decision to make and actually agree to having to use a wheelchair. We chatted away and I managed to put her at ease straight away about it, explaining that it hadn't felt like that at all for me, as it was the most liberating and best decision I had made. Once I had been ill for about a year or so and the doctors had done all they could to help me and try and make my quality of life as good as it could be I knew I would not improve any from this and getting the wheelchair was a huge step in enabling me to be able to do a lot more than I was managing at the time.
With Pulmonary Hypertension, the right side of the heart has to work much harder than that of a normal person's, because it is trying to pump blood through to the lungs against the unnatural high pressure that has built up in the pulmonary arteries and it is trying to get blood through blood vessels in the lungs that are dilated and thickened and are not as flexible as they should be. My heart has a murmur and extra loud beats and at times can beat far too fast, because it persistently works much harder than a normal heart and is under constant strain. Any exercise, even just gentle walking, makes your heart have to work even harder.
So if you imagine yourself going shopping with me, just browsing round somewhere like Marks and Spencer's perhaps, your heart is beating and working normally, but mine is doing all this extra hard work now because I am walking around, it is really like I am jogging by your side while you walk slowly. We spend half an hour browsing, all the time my heart works as though it is jogging while you walk, after half an hour my body is tired out and my legs are aching badly. It's time I had a rest.
We would like to have a look in another shop next and although I have rested, my heart has still been doing the equivalent of walking while I rest. I'm now quite tired, but my legs aren't aching too badly now I have rested them, so I feel ready to attempt going to the next shop, obviously my heart thinks it's jogging again while I walk there and I am more tired this time; I am getting quite breathless too, but my drugs are working really well, I'm bright red in the face as they try and open up my blood vessels to cope with the strain. In days before I was diagnosed, I might have fainted by this point as my heart couldn't cope with the strain of all this exercise, sometimes the strain to just get out of bed would make me pass out when I was at my very worst.
Even most normal people might begin to feel a bit breathless by this time if they had done all this jogging since they left the car over an hour ago. I need to stop and pretend to look at something in the shop I have no intention of buying, just to get my breath. Really I need another rest, but I'll just try and keep jogging a bit longer while we buy what we need to buy. My legs are really aching now, my body is tired and it's telling me it's time to stop. We have to get back to the car, I really will have to have another rest first, but then I've got to push myself to get back, like I'm on that last leg of a marathon run.
It is a relief to get back to the car and once home I need to rest for an hour or two to get over it all and there is no energy left for anything else that day. I have had a really lovely time though while out shopping, I've enjoyed myself and it's been worthwhile the effort. You are feeling really well, you have had a lovely afternoon shopping, browsing and having a few cups of tea and now your off to cook dinner before you have to start getting ready to go out again.
I remember the time we bought the wheelchair well. We were on holiday in Suffolk, we had had a few days where we had been out for most of the day, trying to see all the sights and visiting all there was to visit. It was day three of our holiday and we had just arrived in Southwold, I had tired myself out over the last few days, doing quite a lot of walking, albeit only slowly and on top of that we had gone out each evening too and I couldn't keep it up any longer; I really couldn't manage to even walk one step more. We sat on a wall with a cup of tea, just near to where we had parked and I was people watching, everybody was marching along with their dogs and their prams and their buggies and enjoying the autumn sunshine; walking looked like the most natural thing in the world and I just couldn't do it anymore and I remember thinking we weren't really going to see very much of Southwold or very much of anything else that week if I tried to carry on as I had been. We were on our way to Norfolk next, I felt like I wanted to go home because I felt so exhausted and unwell. It was at that moment Rob and I stopped and thought we should not give in and give up on the holiday, but find me a wheelchair instead. So off we drove to Norfolk and very easily managed to find a disabled shop near where we were staying and bought a wheelchair.
We then had a great few days in Norfolk and managed to carry on with our holiday to the full, we managed to get out and about again and see all there was to see and more. Rob learned to negotiate pavements and crossing roads with it and I had to learn to stop pointing the way and giving orders where I wanted him to go. He threatened to push me over a few cliffs at times, but we emerged from that holiday with a whole new lease of life. We could get out and do things now without the worry of whether I would exhaust myself out or not.
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| Yes he is busking in a litter bin! |
Since then we have gone out of our way to do lots of things now we have the wheelchair, things that I couldn't have managed before. It usually always comes with us on an outing that involves walking and has enabled us to do so much. It is great for me because it saves my energy while I see and do all I want to do and great for Rob because he doesn't have to worry about me quite as much and he gets a bit of extra exercise pushing me about than he does when he has to walk at a snail's pace with me. We have visited so many places and done so much because we have the wheelchair. We have had many a day out to historic houses, gardens, the seaside, museums, the countryside and towns and cities, which we just wouldn't have managed without the chair.
I always try and balance using the chair with some walking too, as I have to try and keep my strength up ready for transplant and keep my muscles working and as strong as I can, so sometimes we look a bit like Lou and Andy from 'Little Britain' as I just get in and out of my chair and walk about a bit and we do get some funny looks at times. You can also be a bit invisible to some people and Rob can be known to give these types a crafty ram in the back of their legs if he thinks they have been really rude.
We try and venture out somewhere each week with the wheelchair and for this weekend's adventure, we took it to Cambridge. Rob pushed me for miles around the bumpy old pavements and winding streets, while we enjoyed the lovely sunshine, soaked up the vibrant atmosphere and admired all the stunning scenery and architecture. We people watched from pavement cafes, watched people punting on the River Cam and browsed around the colleges, where there were many photo opportunities as you can see! I think Cambridge has to be one of my favourite cities, if not my favourite. The warm sunshine and tourist ambiance made us feel as though we were miles away from home, not just an hour away and we came home feeling so relaxed.
There is no way I could have done all this, this weekend, without my trusty wheelchair, with it I can live my life to the fullest. The day I got my wheelchair was a good one and we have never looked back, only forward to what we can enjoy next with it.
