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Deterioration, Acceptance, Determination

Recently, my health has deteriorated again. Last year was a fantastic year despite my health and, though I was poorly, I was relatively stable in some aspects. I pushed myself harder than I thought possible to sit up, building up my core strength and tolerance after being bed bound for almost four years. I achieved a lot. Getting Molly gave me the inspiration, strength and courage to get up and work as hard as I did; I wanted to train her, walk her and care for her myself. I was determined not to miss out on the wonderful (but hard work) puppy stage. I was terrified that she wouldn’t love me and I wouldn’t be able to do anything with her; she’s my dog, after all. I worried that, if I wasn’t able to do things with her, that she’d love mum or my carers more than she loved me. It couldn’t have been any more different. I fondly remember the day we picked her up; I’d been in hospital for about 5 days and we drove from the hospital to Sittingbourne in Kent and then home. I was poorly after suffering another bowel obstruction, but as hard as that journey was it was worth it. That journey sealed our bond. She wriggled like mad and cried for a while and then suddenly she looked up at me, went quiet and settled down to sleep. Since then I’ve been Molly’s safety net, Molly’s mummy and Molly’s best friend. If ever she is worried she will come to me, and she can only fully relax when with me. We are a team and we learnt a lot together last year, and had lots of fun. We even won an award at dog training: the working partnership trophy. What an end to a fantastic year. 

In September last year I had a suprapubic catheter put in as my bladder no longer works, while we figured out what to do next. I never really recovered from what was a fairly minor procedure. The infection I have in my PEG (stomach tube), Staphylococcus Aureus, happened to colonise my catheter site too. My PEG, which I’d had in for four years by then, had never healed and was always infected, and my catheter has followed the same path. Both are still infected now, quite nastily, and seven courses of intravenous antibiotics haven’t cleared them. The infection that had already taken up residency in my bladder (another infection, Faecal Streptococcus – which had spread from my bowel into my bladder) for three years got a lot worse. The seven courses of IV antibiotics haven’t cleared that up either, despite six of them being tailored to the bladder infection itself. It’s all rather frustrating. They make me feel awful, despite me already having many reasons to feel unwell. They’re just more problems to deal with. 
We saw a consultant recommended to us to decide what to do next. We all agreed that a Urostomy – a stoma bag for urine – was the only way forward. We saw him privately initially to ask his advice as we were told he’d retired from the NHS, but he still works on the NHS a third of the year, and so he referred me to himself on the there. We saw him on the fifth of March, and I am on the urgent/emergency list, but as yet we have heard nothing. It could take six months; six months I cannot spare since my time is limited. He understood the urgency but he only operates once a month. He is happy to delegate to another member of his team, which should speed things up. We just hope it won’t take too long so I can get back to living. 
Then, the week after we’d been to Crufts I developed a chest infection after I choked on a drink. My windpipe doesn’t close off properly when I swallow, as many swallowing tests have shown, but I’d managed for a few years without any major choking episodes. It went straight onto my chest, but fortunately ten days of intravenous antibiotics and nebulisers cleared it up. 

For about 5 months now, in addition to my POTS where my heart races when I sit up, I developed these episodes where my heart goes into an irregular rhythm. It beats hard, skip beats and beats erratically and in no rhythm at all and I feel faint and go grey. They initially happened once or twice a month, then once a fortnight, then once a week, and now they happen every day/every other day. They’re horrible, my chest hurts and squeezes, I get breathless and my chest heavy and tight, I get numbness and shooting pains in my left arm and my heart aches after an episode. They worry us all, and we’ve had to call an ambulance twice and I’ve been into hospital but discharged as it always goes back into a regular rhythm after a while: sometimes an hour, sometimes it lasts up to seven or eight hours. It’s scary. I’m currently waiting for a holter (heart) monitor which I will wear for a week and it will record my heart beat. This means they will be able to see what goes on when I have an episode. The referral has been sent, I’m on the waiting list for my case to be graded and depending on what my case is graded, I will get an appointment quickly or in the standard waiting time. I am in bed when these episodes happen and am always relaxed; sitting up sets off episodes sometimes, but mostly they happen when I’m in bed and we’re watching TV or I’m reading. We do wonder if it’s my POTS and the autonomic (think automatic) nervous system dysfunction, but I’ve had that for five years and never have I had problems like this until the last five months.  
I am also waiting for spinal injections to help with the pain in my back due to the bony swelling and degeneration, soon to see an endocrinologist to treat my Osteoporosis and need to see someone about my hip. I was also recently put on the End of Life Care register, which is for people that only have a few years left to live. I, however, am determined to far surpass the expectation and they’ll be telling me to hurry up in many years to come!

My quality of life since September/October has been extremely limited. I’ve been bed bound for most of it: I’ve only been out a handful of times and most of that was to do with Crufts, except for Parliament and a few other things. The pain has been awful and I’ve been very frustrated at not being able to do much; even writing has been difficult. The brain fog has been bad which means I can’t think or get my ideas down on paper, my short term memory is rubbish and I often can’t think of the word I want. It’s like there’s a huge, dense fog in my brain and all the ideas and words are lost in it. Sometimes if an idea or word is close enough I can just about make it out, but the rest of it is lost and it takes me forever to find it. It is very frustrating. I am trying to get started on the books I have planned, but progress has been very slow. 
Not being able to sit up has made me feel useless, worthless, frustrated, fed up, sad and like I’m letting everyone down. I have so many wonderful people in my life and so many plans but I haven’t been the best friend to them and haven’t been able to do much. Being stuck in one room is horrible; I’ve already done that for almost four years, I don’t want to do it again. I’m missing out on so much and I feel like I’m letting Molly down as she hasn’t got me helping her to reach her full potential. I love dog training and walking Molly and that has been a huge part of my life since we got her, and I want to get back to that asap. We were having so much fun. I want to push on with her assistance training, progress in general training and agility and do all the things Lisa (our trainer and good friend) and I have planned. I have so many plans, I don’t have time to be ill! 

Since I became sick and disabled in 2008, I have deteriorated quite rapidly. Things have come one at a time though, so we get time to get used to and accept each problem or deterioration before another problem arises or deteriorates. Of all the things I have lost and will never be able to do/will miss out on, not being able to sit up at all, or for very short periods, has hit me the hardest. You can’t do anything laying down. Watching TV and going on the laptop/iPad, but not much else. I like to craft but it’s too difficult in bed, you need to spread out on a table really. I can’t walk or train Molly laying down, I can’t do out laying down – you can get wheelchairs that go flat but I’m 6 foot 1 so too long to go around laid down. It’s difficult full stop. I make the most of it, writing, editing photos, making videos and connecting with and helping others, but it’s not enough for me. I’m and outdoors-y person, I hate being inside. I’ve always been like that, I love nature and taking photos of nature and seeing all the wildlife and being with animals. That’s who I am. To be stuck indoors – in one room – can be very isolating and unfulfilling. I’ve lost so much. Being disabled doesn’t bother me too much – except the lack of disabled access and wheelchair friendly walks – and I can cope with it. Being unable to sit up, keeping me indoors all the time I just cannot accept. 

So I’m fighting back. Like I did when I first got Molly, I’m pushing myself to the maximum. I’ve deteriorated again, and I’m not going to get better, so I need to make the most of what I’ve got; however little that may be. I’m a positive, glass half full person, and I’m certain I will regain some quality of life. I have so many plans, with Molly, with my writing and speaking, with my photography, my charity work….so many exciting things in the pipeline. I will get there, it just might take me longer than I would like it to. I’m not giving up, my body and EDS, POTS, intestinal failure etc. won’t beat me! Crufts and Parliament were only the beginning. Watch this space….

High Five! Molly and I are a team.

This Post Has 9 Comments

  1. Lucy, the main thing I want to say to you is thank you. Thanks for showing up here and telling the truth, telling your story, not matter how difficult it is. The other thing I want to say to you is that you have inherent value. Inherent value. The fact of you is enough. However you are. You are enough. More than enough, really. Your value does not depend on what you do or what you accomplish. You are inherently valuable. Just as you are right now and just as you will be tomorrow or any time after that, you matter. Your life is valuable. You are an unrepeatable miracle. Just as you are. Hug Molly close to you and know that you are important, that you matter.

  2. I don't know what touched me more – Lucy's post or your reply. I am humbled by Lucy. She has made me realize that there is good to be found even in the worst of situations. So, Anonymous, I SO have to agree. Lucy matters. So much.

  3. I have to say I agree with Anonymous. Lucy you are strength,love, friend, good and any other positive word I can put in here. If anyone can get where you want to be or that will work for you, it will be you. You have more strength than anyone I know. Don't ever forget what a inspiration you are.

  4. Lucy, you are awesome, truly! I see you like butterflies.. Well you are a beautiful butterfly. I also like them and love dragonflies. The reason I am talking about butterflies is that sometimes it is the most fragile things that are the most beautiful.. You are delicate as the wings of a butterfly and your grace and beauty shines x

  5. Lucy-please don't ever say you're useless or worthless. You are such a brave person and such an inspiration. There are so many people that care for you and are rooting for you. Never give up…Love and prayers from New Jersey

  6. Beautiful words from a beautiful person. I want you to know that I can relate to your issues with acceptance; even though my Eds and Pots haven't affected me to the extent yours has, the gradual yet persistent deterioration is very similar and continues to disable me from more things every year. I often think that it's the fact that the adjustment and acceptance process never staying the same but constant that's the hardest. I feel similarly to the way you feel about Molly but about my children. We have to remember that they love us no matter what. I hope you can take some comfort from knowing you are not alone – I don't share the same pain and complications but I completely get your emotions. Thank you for sharing your honest, candid blog. I think you are amazing xxx

  7. Thank you so much "anonymous", whoever you are, you have given me so much strength, strength that will enable me to persevere. I can't tell you how helpful what you have said is and I will treasure those words. So thank you, and to everyone who reads and those who comment on my blog x

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