What if we viewed lived experience as an asset? As an asset of professional, economic,…
Fifty-five thousand. 55,000! That’s how many views this blog has amassed at the time of writing this post. 55,000 people over the past 22 months have read my blog, or at least one of my posts. That’s 55,000 people educated on Ehlers-Danlos Syndrome, POTS, Pseudo-obstruction and intestinal failure. 55,000; I cannot imagine that many people. It’s insane. I never thought I’d reach 1000 views, so 55,000 is inconceivable. It just makes me ever more determined to do more and reach the next milestone.
I came into writing and speaking with the vague wish of “making a difference” – I really hope that I am achieving that goal. I hope that I am inspiring others and setting a good example. I hope that what I am doing is beneficial. It’s hard work, I won’t lie, when you have limited time and energy and how much you do can vary so much day-to-day, even hour-to-hour. Some days I can do nothing; others I can do some work, either in one moderate block or in lots of smaller blocks interspersed with rest breaks (which is how I manage 99% of the time). I have to pace myself like every other chronically ill person. I work as hard as I can to do what I do, and I want to show others what hard work and good pacing can allow you to achieve. If I am giving a speech or attending an event I know that, to enable me to cope, I will need to rest in the days leading up to the event and also allow myself several days to recover. The rest of my work is done from my bed. With a laptop, iPad or tablet etc. and internet, it’s amazing what you can do. I’m not the only one making a difference from my bed, so many people do so much. My friend Jessica, bedridden for 8 years with severe ME, has set up a charity, Share a Star, and has brightened the lives of many sick children, including writing a song, ‘Spread The Hope’, which is due to be released soon in aid of four wonderful charities: Share a Star, Post Pals, Help Harry Help Others and The Katy Holmes Trust.
Despite all the problems and hardships in my life, and all the recent setbacks, which I will go into below, I have lots of very good news to share and things to be grateful for. I was chosen by The Media Trust to receive mentoring from someone in the industry, and I will be mentored by a journalist and health correspondent. I am so excited about this. Our “meeting” on Skype has been delayed by my surgery and complications but should go ahead this week. As well as this, I have been invited to be the guest speaker at The J’s Hospice Charity Ball, I’m writing a magazine article for the Department for Education, a blog post of mine (Why is death a taboo?) is being simplified and used in a textbook for 11-14 year olds, I’m speaking with my hospice nurse at a conference for doctors this month, we’re reorganising my meeting with Dr Dan Poulter MP at the Department for Health and there are other projects lined up that I will tell you about in time. It’s all very exciting and very busy, lots going on to keep me focused – albeit hard to keep up with at times – but I wouldn’t have it any other way. I thrive on the pressure and love having things to do, and enjoy the positivity these things bring into my life. I love being able to help out charities and organisations as well as supporting individuals one-to-one. I have a fantastic support system and so many wonderful people in my life now and they never fail to pick me up and bring a smile to my face. I hope to do the same for them. Yes, you, reading this; your support means so much to me. I am so grateful to you all.
It all started in 2011 when I said to my hospice nurse, “I want to make a difference, Bev”. It is through Bev that all of this started. When my mum and I realised just how serious my condition is I was frightened that, when I leave this world, my life would not have meant anything. That my life would have had no meaning and no significance. How could I make a difference in this world? I started the blog at the suggestion of a journalist who was doing work for The J’s Hospice, and how glad I am that I did. Then, in 2013 Bev put me in touch with Together for Short Lives, and things really took off. It started with my speech in Parliament, and it has escalated from there on. Talk about starting at the top! I could never have foreseen all the things that have happened since. This year has been the best yet, I’ve done so much since Parliament which was a year ago on the 19th of November. It’s amazing. I’m so grateful for all the opportunities I have been given.
A lot has happened in the last year with my health too; it’s almost been seven years that I’ve been ill now, but the deterioration in my condition this year has been rapid, much more so than any other year. Transferring has become a lot harder due to a number of factors, including breaking my hip, my Autonomic Neuropathy/POTS worsening and general EDS deterioration. My bowel struggles ever more to tolerate what little fluid I take in, with far more frequent vomiting and ever increasing amounts of bile refluxing into my stomach which necessitates that my PEG be on drain 24/7, and I’ve had a few gastric/bowel bleeds. My spine is degenerating at a rapid rate, the Scoliosis (side to side curvature) and Kyphosis (which causes a hunchback appearance) increasing greatly over the past year and as a result sitting up is even harder and I now require more supportive seating. I am no longer “safe” in a chair without specialist support. My bladder was constantly infected, inflamed and bled, though it is now redundant as the urine is diverted from the kidneys, down the tubes and through a section of bowel made into a stoma (Ileal Conduit/Urostomy) over which I wear a bag on my stomach which is connected to a larger drainage bag due to a high volume of urine and a very flat stoma. Though still losing blood in my urine, and being infected with MRSA, the Urostomy is so much better than having the catheter. We’re waiting to go back and see my neurosurgeon (spine surgeon), the endocrinologists for the Osteoporosis (my bones are very thin, as you would expect from someone in their 70’s) and Hyperthyroidism (overactive thyroid). We are also waiting for swabs and blood results and about the blood in my urine. We’ve got to be even more careful about infections now too, my body isn’t fighting the ones I have and we have alcohol gel everywhere.
Generally things are not going well. I went into hospital on the 2nd October (my 21st birthday, yet another spent in hospital) ready to have the Urostomy (Ileal Conduit) formed on the 3rd. I had to have a CT scan which wasn’t able to take place until 6am the following morning due to a lack of IV access and we had to roll with only half the dye being infused as my cannula blew and we’d already spent all night trying to get a cannula in. My surgeons had to wheel me up from CT themselves. The anaesthetist went through the post-op pain relief options, which were PCA (where the patient pushes a button when in pain to get a dose of medication) or an epidural (spinal drip which numbs the body from the point of the tube down). In EDS patients, epidurals only work in two thirds of cases, so there would be a one in three chance of it failing. This, combined with the severity of my spinal degeneration and the risks, which are also increased in EDS patients, meant our only option was PCA. The operation went ok, it took a lot longer than normal and they had trouble forming the stoma due to EDS floppy tissues, and aside from that and a very wiggly scar to avoid scar tissue, the op was a success. Post-op did not go well. I went without pain relief for a few days due to a lack of IV access (PCA doesn’t work with Hickman lines as there’s too much dead space so you need a cannula – not even the top anaesthetists with ultrasound could insert a cannula and I was stabbed about 20 times a day over 4 days trying to get cannulas in). My only option was to increase my existing pain relief until a week later when I returned to my normal doses. I remained in ICU/HDU for 5 days before moving to the ward, and I went home that Friday (10th). Unfortunately I was readmitted on Wednesday 15th October as my inflammatory markers were through the roof and my haemoglobin was very low. I had a Hickman line infection, Hickman site infection, incision infection and an infection (MRSA) in my Urostomy. My Hickman line had to be removed – normally a simple procedure, but they had to dig it out of my chest so I have quite a big scar. They put in a PICC line (a central line that exits on the arm) but we couldn’t use it for 2 days as it was too deep in my heart and it took two days of pulling back and x-raying until it was in the right place. When we could use it, it was very resistant, only worked with my arm in one position and wouldn’t bleed back, so we were back to finding veins for bloods; but at least I could finally have fluids, continue the (vital) IV antibiotics and have my medication after 2 days without. A new Hickman line was put in on Thursday 23rd (initially booked for Wednesday but a communication breakdown meant my slot was cancelled) and I was supposed to be allowed home afterwards, but towards the end of the procedure I went into a form of autonomic shock. My heart rate shot up, blood pressure dropped, I was drenched in sweat, felt dizzy and sick, had this burning in my chest and couldn’t breathe properly. I had to be given oxygen and IV medication, and an ECG and chest x-ray performed. The ECG showed sinus tachycardia (a very fast heart rate – mine was 140 – but in a regular rhythm) and chest x-ray was normal. I spent 3 hours in recovery being monitored. They kindly allowed my mum to sit with me and finally, 4 hours after going down for the line insertion, I was allowed back to the ward. I wasn’t stable enough to go home though, so had to stay overnight. The PICC was removed and I was stable enough to go home on Friday (24th).
So here I am – enjoying being back at home with my family and Molly. I still have infections in the incision, the Urostomy and my PEG site and I do accept I am very poorly. I’m on IV Flucloxacillin to treat the Staph infections; I am allergic to Penicillin and Flucloxacillin is a Penicillin-based antibiotic, but we have had to weigh up the risks: the risk of the infection overwhelming my body verses the risk of a reaction, and so we have to treat the infection which is only sensitive to Fluclox. It is unusual to be given penicillin based intravenous antibiotics at home when a patient has previously had a bad reaction. My mum persuaded the GP to allow me to stay at home providing my mum monitor me very closely and promise that she would take me straight to A&E should I show any sign of reaction to the drug. So mum is monitoring me closely for any reactions. I’m still losing blood in my urine, which should have stopped a long time ago, am running low-grade temperatures all the time and had a suspected stomach bleed (blood in my PEG bag) Saturday night. My heart has been going into an irregular rhythm quite frequently too. It all just shows how much my body is struggling, it is tired and overwhelmed. The focus for me at the moment is keeping me stable and keeping me at home.
I’m just grateful for the things I have and I am looking forward to all the things I’ve got to do. I sometimes have to pinch myself that I have been given these opportunities. I am making sure, as always, I concentrate on the positives. I just hope I am making a difference and that all I am doing is benefitting others. My fear that I would leave this world without making any contribution is, I hope, no longer something I have to worry about. Thank you for believing in me, supporting me, encouraging me, reading my blogs and making my life count.