Recently I have been waking up, wanting to go for a run, only to remember I can’t, and that I never really ran anyway. I mean, I was fast over the 100-metre dash at high school (long legs), but I never had any stamina for long distance running, and I always hated the cross-country running in gym, as well as the annual fun run around the local hills and dales. I once did fell running, but that’s a different deal altogether.
Nevertheless, I wake up feeling like I have more energy, and I’m instantly thinking ‘running’. When I get up, however, the harsh reality of my situation then comes home and bites me on the behind. I have a lack of energy in my muscles, and my chest and legs burn if I even try to push myself a little by walking further than the six or seven steps I can usually manage.
People who have known me for a long time, know I was an outdoors person when I was young, and that I spent my life walking, cycling, swimming, climbing and more. For many years I worked outside in a physically demanding job, and most of my childhood had been spent playing outdoors. My health had improved such, that I was strong, fit, and healthy. Quite a departure from the kid who needed a nebuliser when we lived in a big city in the 80s.
The change back to illness, again, then, hit my mental health hard (which I’ve already written about). Not being able to access the outdoors pursuits I once loved, and found peace doing, made me feel like stresses were just piling on and on, and I couldn’t relieve them. I never had any other mechanism for dealing with things like that, other than being outside.
Twelve years ago, my first set of lung clots hit me. I remember having a DVT as well afterwards, and a nurse told me that she’d also had some multiple bilateral, pulmonary embolisms, and that it took her about five years to fully recover. It was difficult to hear (it’s a long time). As time went on, this sentence stayed with me. I remember not feeling any better as I passed this milestone myself (the milestone she was already back to work at), and I felt worse.
So, I took action for myself. I pushed forward. I brought the drums out of retirement, and started rehearsals. I could play less than the time it took for a single song to finish (minutes). I felt useless. But, I pushed on anyway. The practice sessions went from me being able to play for a matter of seconds, to being able to play for 7 hours straight. I was recovering! So, I played jam sessions (or open mics as they are here), and joined a band, where I built myself up to playing multiple gigs, over long weekends. Even driving up from working in Swansea one day, to then playing a gig the same night. It was incredible.
Then, on stage at one gig, I visibly changed. You can see me coughing on one video, and struggling with the pain and discomfort of another blood clot hitting my lungs. This was seven years on from the first lung clots, and this time, instead of the doctors telling me there were too many to count, they simply said, it’s one, large, clot. That was five years ago now.
It has felt much worse this second time. The wheelchair was needed almost constantly, I lost a lot of bone mass, and my breathing has become laboured. It burns in my chest when I exercise. In addition to this, the bottom of my back hurts, I get sores from sitting down all the time, my legs burn when I stand up, and just about every joint I can name, is very painful. This causes a lot of fatigue.
So, you can imagine how annoying it is, to have your mind waking up feeling refreshed, wanting you to go running, and your body saying no! Well, I’m not having any of it. There must be something in me, that’s saying this is the right time to push forward physically (I worked throughout it all, anyway). It’s coincidentally five years from the last major incident, so perhaps I just need to build up the strength in my chest, and then the rest of my body?
I tried to do a few things myself initially. I tried a nebuliser again, which only really helped to take phlegm off my chest (presumingly because of inactivity). I bought it myself, but I was prescribed the medication. I also then tried supplemental oxygen, which I again bought myself. I basically wondered if I’d be in less pain if I had more oxygen in my system, and low and behold it worked. I’d never hit 100% saturation before. I felt less tired, more awake, and the fog seemed to lift. Thus, it was reinforced that my lungs needed building up before I could exercise properly. Something I have been repeating to doctors ad nauseam. I simply cannot keep buying oxygen, though, it’s too expensive.
So, I reached out to a local gym. Simply asking what sort of help they could provide to someone like me, in a wheelchair, who wants to be out of said chair (even if I have to walk with a stick, slowly), and who suffered with tiredness. The reply was lovely, and it mentioned an ‘Exercise Referral Scheme’, and that I should contact my GP about a referral. So I did. Excellent!
Despite the fact I have been using this wheelchair for ages, that I break down in tears when seeing any GP or specialist who asks how I’m doing, and that I am generally unhappy with my situation, not one single NHS person (even physiotherapists), has/have ever mentioned this scheme to me. That’s not good, really. The GP referred me as soon as we made the call, however.
So, I went for an assessment, which was a basic interview to see how I feel, and to see where I might need support from their end, and I was given a card and timetable to access the local facilities. Progress!
The person assessing me, asked me a final question as he closed his laptop, that felt a little odd though. He said, why choose to do this now? I mean, is there a right time? Given it’s taken me years to even get anywhere with my mobility, and no-one has ever mentioned this scheme to me, it felt like an odd thing to say.
I thought it was obvious, but essentially it’s because I’m starting to feel ready. It’s taken a long time to feel like I have built up enough strength again to take that next step forward. The last effort to get back to some sort of normality was a hard slog, and then yet another crash. This time, it hit me even harder, and it’s been difficult to see a way out of it all. The pain, immobility, and fatigue have been overwhelming.
My family and I have been also been working on finding not just ways to push forward (like approaching the gym, that lead to this scheme), and finding, not alternative treatments as such, but things I could do myself (like the oxygen), but other ways to exercise outdoors (another blog on that soon). We also added to the plethora of tablets I take a day, things like cod liver oil, vitamins, and muscle pain relief (that again we get ourselves), while also making sure we drink the right amount of water.
Cumulatively, this effort has given me some optimism, and I feel that now is the time; that if I can just put the effort into extra exercise, I will reap the physical rewards of said exercise. I will also have the extra benefit of being out and about, which will keep me smiling (I don’t need much, really).
My doctor did leave a note on the referral making sure I didn’t push myself ‘too hard’, which was concerning, but they are pretty non-communicative anyway, so I’ll try not to read too much into it.
So that’s it. A huge, and round about way to say I have been afforded some support, I am deeply thankful for it, and that I will be putting what energy I have, into further recovery, with some guidance from people who know what they’re talking about exercise wise.
Perhaps one day, in years yet to be seen, I will get to do a run.
Peace
Emma
PS: I had my first session, and it was very encouraging. I managed way more than I thought I would be able to, and it did have a positive effect on my chest, however I did feel it in my musculoskeletal system afterwards. I will have to push on.