One of the worst parts about being ill is when I am on a decline. For six months I could feel myself deteriorating every day. Slowly being able to do less and less. Slowly getting more and more breathless. Slowly getting weaker and weaker. I felt helpless. It is a scary experience, as you are never quite sure when the end of the decline will come, or even if it will come. Having a rare disease usually means getting used to not having explanations or reasons for problems. But this time, after many months of testing, I was relieved that they were able to explain what was causing my problems- my Pulmonary Hypertension (PH) had worsened, and I’d developed a new disease, Pulmonary Venous Occlusive Disease (PVOD). Getting an explanation for the decline helped in many ways, answers are better than questions. However it also brought with it a new worry: Would we be able to stop the deterioration? Any increase in the PH medicines is likely to worsen the PVOD further. As I can no longer have a medicine increase, how would we stop my continuous decline? It was a scary time.
However, at the start of April, after six months of uninterrupted descent and increased symptoms, I realised I was no longer getting worse. I had plateaued. Previously I had been waking up each day to find that I couldn’t walk as far or do as much activity as the day before. Now I was able to do the same each day for a week. It was such a relief. Then, amazingly, in the past few weeks I have slowly started getting stronger. I have slowly started to improve. I have slowly started to be able to walk further. I have slowly started to be able to do more activity than the day before. Although I am still a long long way from where I was last summer, at my healthiest, I am so happy to be moving in a good direction at last!
At my lowest in March I struggled to walk across the room due to breathlessness. I was unable to cook food, so was eating a lot of tinned soup which I could just about warm in the microwave! Dinner was being cooked by Phil every evening. In fact he was having to do all of the chores around the house. I was forced to spend my days mainly sitting down. Having a shower and getting dressed drained me of my energy, and I needed a couple of hours to recover from both. I had lots of pyjama days! I was barely leaving the house, except for hospital appointments, and I was reluctant to have visitors as I could only cope with them for one hour before my breathing started deteriorating. March was a really difficult time.
However, fast forward two months, and I am feeling so much stronger and able to do so much more. When I realised I had stopped deteriorating and had instead plateaued, I started trying to push myself slightly to test my new capabilities. The last few weeks has been a gradual process of slowing adding things to my daily routine to ensure I do not do too much. I’ve learnt over the past three years that routine is really important to my recovery. I need to be consistent everyday, so my body knows what is expected of it. I respond badly to erratic differences in activity each day- extreme activity is inevitably followed by exhaustion. Therefore I try to limit these to the weekends, and instead strive to do the same amount of activity every weekday. If I’m feeling quite strong then I might endeavour to add one small new task, initially doing it with rest breaks in between and after. If my body doesn’t respond with exhaustion or an increase in symptoms, then the next day I either repeat this or try to do it again without any breaks. Eventually I am able to do that new task as part of my daily routine.
So two months after my lowest and weakest point, I can now have a shower and get dressed every day again, needing only half an hour rest afterwards. I am once again able to boil my own egg for breakfast. Lunch is no longer daily soup, but I’m back to my extravagant salads! I’ve taken over cooking in the evenings- initially it was food that I just needed to pop in to the oven (e.g. pies) but now I am trying to create more dishes from scratch. Last week I managed to cook a lasagne, which is quite a time consuming dish, so I was very excited by this achievement! I can now do the washing up every day, and tidy up around the house. All the paperwork is finally being caught up with! I enjoy being able to do chores again, as I feel that I’m contributing to the world slightly! Even more amazingly, after a four month break, this past week I have even started being able to do my weight training exercises and walking again. I am so so pleased to be able to do these; it is important that I keep my body strong and my lungs exercised to increase my chances of recovery if I am lucky enough to be given a transplant. And obviously I feel so much healthier and happier, when I’ve managed to release a few exercise- induced endorphins!
Excitedly the amount of time I can be out of the house on a trip, or having a visitor has also increased considerably. Instead of staying in, or limiting my visitors to one hour, I have slowly managed to increase the amount of time I am able to be out of the house. Last weekend we were lucky enough to attend the beautiful wedding of one of my school friends, and I managed four hours of celebrations and catching up! I was astounded by this, especially as the wedding fell only two days after a very long hospital visit. Furthermore, this weekend, one of my lovely university friends came to visit with her excitable little toddler. I happily coped with a four hour meal and scoot afterwards, with continuous talking. I was even able to play with the little one for a while- he loved driving my scooter with me! Happily, I am now joining in our daily dog walks again, and have even managed some delightful evening pub garden visits! Life is great at the moment, and I am very happy and thankful. Whilst I have this increase in strength and reduction in symptoms, I am excitedly filling my diary with weekend day trips and meet ups!
However, strangely, I am not entirely sure what has caused me to stabilise again; I suspect that it is a combination of factors. The addition of wonderful oxygen is probably the greatest cause. I am reliant on oxygen for all activity; happily since starting to use it I no longer feel ill or get as breathless as quickly. Instead of coping with an oxygen deficit with the simplest of tasks, my muscles and organs are now getting the correct amount of oxygen. Another causative factor might be the steroids. I was not expected to notice any differences whilst on the drug, however from the first drip I felt like I had slightly more energy. I believe that the steroids are not repairing my lungs, as I am still so reliant on oxygen, but I am wondering if they are giving me an energy increase as a pleasant side effect! Finally it is highly likely that the arrival of spring has greatly contributed. The sunny days, the blue skies, new birth and new starts everywhere. The start of Spring undoubtedly lifts my mood, and positivity certainly aids illness.
Of course my outer symptoms do not tell the whole story. Whilst I am delighted that I can currently do more, I do not know the present condition of my heart and lungs. As I have two progressive diseases, without any further treatment options, it is probable that they have still been deteriorating, so my internal condition has not improved at all. I am returning to the Brompton in a fortnight for a check-up, and I have my fingers crossed that they are stable also. However regardless of those results, I am so happy and thankful that I can do things again. For me having a chronic illness is like walking in the hills. There are points where I am getting stronger and slowly climbing higher and higher into the mountains, enjoying the view and enjoying life. But then I can come across a slowly descending valley, or even worse a cliff with a dramatic drop. Unfortunately I can’t see what is ahead of me- am I going to carry on up the hill for a little further, or is there a valley around the corner. I’ve learnt not to worry too much about the future as I am unable to influence it, but instead try to enjoy life at whatever point on the hill I may be on. So valley or hill, I don’t know what my immediate future will hold, but right now I’m very happy and thankful.