I’ve not been myself for eight weeks now. Eight frustrating long weeks. During my favourite season of the year, at the point where my diary is chock-a-block full of plans… I have instead spent most days lying about in my pyjamas. If I’m honest, this has turned into the summer of the sofa. 😦
The summer started so well. Maybe too well. The sun’s rays revitalised me, the blue sky cheered me, the growing vegetables excited me. In May, June and the start of July, I had extra energy and extra enthusiasm… so I did extra things. I filled my diary with more activities than any PH summer before. Day trips, weekends away, holidays, evening visits, dates. I wondered if my incredible body was randomly improving, as I felt good, really good, wonderfully good. With extra energy and extra breath… I wanted to take advantage, to make the most of it, to cram as much living in to my time as possible. So I did.
For two months I didn’t have a weekend off. For two months I did something mid week every week. For two months I managed the odd chore that I never normally have the energy or lungs to do. For two months my life increased a gear. It was fabulous. 🙂 In addition to all of the wonderful holidays and trips I’ve already blogged about… I cheered as my husband and brother-in-law got electrocuted and stuck in mud (Tough Mudder). I bought an enormous garlic bulb and hugged a grass man (Hampton Court Flower Show). I ate a yummy pizza wedding feast whilst watching my friends caleigh. I ate a boil-in-the-bag curry whilst watching kites fly overhead (freedom camping along the Ridgeway). I had cups of tea with friends from afar, and cuddles with beautiful newborn babies. I had restaurant date nights with Phil, and a competitive games sleepover with friends. There were evenings of dog walks and pub gardens and BBQs. There was afternoons of box sorting, campervan curtain sewing, and chutney cooking. I even ironed some summer clothes! I picked and pruned and weeded and watered the growing vegetables in my patch. I laughed and smiled and appreciated and loved every moment of those months. May and June were busy. Very busy. Manically busy. The busiest I have ever been since getting PH. As my body was allowing me to, I didn’t want to turn down an invite, I didn’t want to say no to ideas, I didn’t want to postpone anything. My amazing body plodded along happily with extra bounce but no extra symptoms. It coped brilliantly… for a while. And then it all came crashing down.
Half way through July my body suddenly rejected my new increased pace. It just said stop.. and then stopped. My last moment of normality, my last point of feeling really well this summer was when I went camping with my best friends. On my return, I got in my pyjamas and lay on the sofa. I hardly left it for two weeks. It was awful. I could barely move, barely breathe, barely function. Instead I spent a whole fortnight not washing, not dressing, being waited on by Phil. Even though I cancelled all my other plans in the interim, and rested continuously on the sofa… I hardly improved. After an energetic weekend away, I’d normally expect to spend the proceeding three days ill. But here I was, still weak and symptomatic after four days… seven days… ten days. On the twelfth day, I started to feel marginally recovered -not 100%, not anywhere near full kilter- but just enough to plod around my house. And then in hope that the previous fortnight had just been a blip, I allowed myself to go away again! However, after another energy-zapping but wonderful 48 hours camping with my family- I returned to my sofa for another week. And there I have stayed.
It has been a really hard two months. Eight weeks of tiredness, sleepiness, fatigue. Eight weeks of breathlessness, weakness, the shakes. Eight weeks of headaches, nausea, feeling cold. Eight weeks of far too many “the day after yesterday”s. Struggling to write a blog for longer than ten minutes, struggling to chat for longer than ten minutes, struggling to sit up for longer than ten minutes (luckily I’ve got a super new support cushion). My body has continually felt like it needs rest and recuperation. So I have obliged. My life has been paused, my diary emptied, my latter summer events mainly cancelled. No dog trips or pub gardens or gardening. No meetups with the nephews, or baby cuddles, or family BBQs. I am turning down invites, postponing visitors, or managing a mere hour with them (My fabulous friend Sal came all the way from Brussels to see me for sixty minutes! 🙂 ). I missed watching Phil running in his ultra-marathon, I missed camping with my brother, I missed a weekend planned for my husband’s birthday. All replaced with a summer on the sofa.
I have done everything I can think of to help my body to recover. As well as the forced rest and break and inactivity, I have been eating healthily, exercising when I have the strength, meditating, increasing my potassium levels (I noticed they’d fallen). Thankfully it is all helping. Each day I feel marginally better than the previous. Each week I feel stronger than the last. Each time I leave the house I can manage longer than before, and need less recovery time afterwards. There is definite progress. I can plod about more, write more, chat more. I have less days where I need to wish away the hours due to symptoms. I even amazingly wonderfully managed to leave the house for a few hours to attend two important events I was loathe to cancel (My friends hen party at Ascot and Cricket)! But I am still a fair way from my normality. I am still wearing my pyjamas for half of the week, still only washing periodically, still being cooked for by Phil nearly every night. Still only lasting a few hours out of the house before exhaustion kicks in, still needing far too many days to recover from a visit, still having more bad days than good. Although it has improved, the problem persists. I have a long way to go.
The physical difficulties have been horrid, but (for the first time) the emotional and mental anguish has been equally as hard. My deterioration came a mere week after being upset at my prognosis, a mere week after being reminded that there is nothing more to help me. As per my normality, I’d happily bounced back from these mentally challenging situations. But by deteriorating only seven days later, these worries returned with a vengeance. And they have hovered at the back of my mind ever since. With exhaustion and tiredness… comes tears and emotions and depression. With deterioration and non-improvement… comes anxiety and worry and fear for the future. With cancelling plans and missing my favourite season… comes frustration and annoyance and disappointment. Very unlike me, every few days I have cried tears and felt sorry for myself! 🙂 Thankfully my fabulous husband has been there to scoop me up each time, coming straight from work to give me a hug on a few occasions! And thankfully Lottie has been happy to sit and cuddle me every day on the sofa (and if I cry she jumps up and sniffs my face- makes me laugh every time!). Physical illness is difficult… mental anguish in addition, makes it many time harder.
So this summer has been a tale of two halves. Two months of activity, followed by two months of inactivity. Two months out in the world, followed by two months on the sofa. Maybe my PVOD has started it’s decline- maybe it is something less sinister. Maybe I burnt the candle at both ends- maybe it was going to happen anyway. Maybe it’s because I’ve lost weight, maybe my body levels are wrong, maybe.. maybe.. maybe.. Hopefully my hospital appointment next week will shed some light, will identify the problem, will produce a plan of action. Hopefully my body will miraculously bounce back soon.
So this has turned into the ‘Summer of the Sofa’… I’m praying for an ‘Autumn of the Recovery’.
We Can Adjust The Sails 
Sending all my love, compassion and prayers. I fully understand and am right asking this journey with you. Keep writing, stay on the sofa as long as your body needs and remember those lungs are coming! Perfectly picked lungs from God at the perfect timing. Praying for your appointment next week. Xoxoxo
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Sarah’ you don’t really know me but this is Elizabeth from the island friend of Celia and Edward my~heart goes out to you~ how we want things to happen doesn’t always run to plan~ my prayers are with you and I hope that your appointment brings some good news for you ~ if it helps think of all the good times you have enjoyed during the summer ~ memories are locked in your heart and hopefully will bring a sparkle to your life~ God bless you and Phil
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