This last weekend I took up the offer of a lift to go away with a friend and a group of strangers, all into photography and night skies, in a farmhouse, at a remote location in Northumberland connected to Hidden Northumberland website. Now knowing how little I have managed of late I knew that I could end up spending most of my time sitting in the wild forest garden, instead of getting out, but to me that is my idea of heaven so I went.
I'm so glad I went along, the location is set high up in a small clearing within a forest, views over hills and trees surrounding a pretty farmhouse, just perfect. There were a couple of options to stroll along pathways winding into trees of varying species, one on reasonable flat ground, which offered me the chance to stroll amongst the wonders of nature at my leisure as little or as much as I could manage.
Two lovely people gave me lifts to 3 locations over the course of the weekend, which enabled me to take a multitude of photographs of different subjects, including wild mushrooms, landscapes and night skies, all within 2- 400 ft of the cars. The result - about 500 photographs and a thoroughly enjoyable weekend getting to make new friends. I'm so glad I went. I managed both days without too much in the way of symptoms which was a surprise given my last outing ( although I was in the position of having to walk miles last time I was out, with little choice other than pay taxis)
Monday came and I only had a little pain and stiffness with very mild malaise, and my usual tiredness - no other major symptoms. Tuesday a little brighter, no pain, slight stiffness, no malaise, functioning psychologically better than I have in months, less tiredness, no malaise, no other symptoms. Usually all symptoms occur within the two days following activity so I was thrilled and paced my activities on Tuesday adding in two small extra tasks and feeling not too bad. I made plans to go on another short woodland stroll to photograph the seasonal fungi and for a two day trip to the Lake district, sure that I was in some sort of remission.
Today is Wednesday, I woke early to rise with my daughter who attends college. I could not wake properly, it took me 15 minutes to get out of bed. I was confused and my mind feels like it is wading through thick fog trying to function but being unable to think properly. I am exhausted to the point I have only managed to walk the length of my flat and back twice for food and bathroom necessities. My entire body is so stiff and literally every muscle hurts ( from muscles in my fingers to my face and limbs/back etc) My ankles, wrists and fingers feel incredibly stiff and although the feel tight/swollen they are not.. Answering the door to a repairs workman was so very difficult as I had to hunt for the words I needed quickly to reply, but was unable, luckily he was very understanding, I must have appeared like a drunk person, holding onto walls as I walked
.
So it seems its just taken longer for the effects of the extra activity to affect my body, although this is highly unusual for me. Its so confusing, I just never know how my body is going to react or precisely when. I actually had hop on Tuesday of a sort of remission, hopes now smashed into smithereens.
Today I have no major tasks I need to undertake, although I do need to make the long walk to collect my bin ( we have to wheel our bins about a quarter of a mile for collection due to lack of road on my street) there is no way I can manage that, I wouldn't dare attempt walking down the two flights of stairs, as I would have to virtually crawl back up and communal council flat stairs in this block are not exactly clean :/
My pluses this week - I got out and had such a lovely time, met new people, learned all sorts and spent much needed time outdoors amongst nature, not to mention the photographic opportunities were great.
The negatives, well its pretty much resulted in a boom /bust effect, even though I tried to take it easy. So I now have to endure x amount of days relishing to wonderful symptoms this silly disease throws at me and I cannot go out until my body is up to it again.
I do not regret going, I would rather have a lovely weekend and suffer afterwards any day. As a patient I am, advised to avoid boom bust cycles at all costs, and yet every single time I go out anywhere I am caught in that exact cycle. It is complete unavoidable if I want to have a life, no matter how much I plan and pace, it is simply what happens. I am told to pace my activities and cycle through short periods of psychological activity, then physical activity and rests. In real life it can be virtually impossible to do this. If I go out to meet a friend for coffee say, this entails using most of my energy getting ready so I feel presentable. Drying my hair nice is usually the nail in the coffin here, if I do this I often end up too exhausted for hours afterwards. It is the activity that steals my energy most for some reason. But M.E therapist suggests I simply leave my hair to dry and go out - well my answer is that its bloody cold sitting with wet hair for a couple of hours at this time of year and the result is bloody horrifying for me, it goes wavy and frizzy which I hate, I look like I've been dragged through bushes, its not presentable and not nice, who wants to go out into the city or where ever feeling they look awful, not me. Mostly I have no choice, I dry my fringe and let the rest dry whilst the heating is on, its fine whilst at home or say the weekend I've just been on, but not for going out with friends in town. I'm sure most women will understand. I am not being vain, I simply like to appear presentable if I go to town. My therapist did not understand and decided I should see the psychologist!!!! Anyway, once I'm ready to go out and have rested, its a good walk to any public transport and it often doesn't turn up on time, which can mean at least 30 minutes walking and standing waiting, I get 5 minutes rest on the bus and a walk at the other end. I can sit in the cafe, but its not restful, then comes to lovely psychological exchange, which I cant exactly say to my friend that I can only talk for 10 minutes then we must stop and rest for ten, that's absurd. Not to mention trying to actually concentrate on what the person is saying and find my own word with all the hustle and bustle, plus music going on - I imagine most people are not aware of how this can be a problem, but there many are times when I cannot listen to a person and hold a conversation with music playing at the same time, my brain just cant seem to separate the two sometimes. This can be frustrating as I really love music, but I have even had to stop attending our local quiz and nights out because of this one issue. If the music is loud and a table full of people are chatting next to me there is now way I can concentrate on a conversation or answer quiz questions. Now back to my afternoon out, once finished chatting there is the walk to the bus, the wait and the walk at the other end. All this put together completely wipes me out, often for days. Its impossible to factor in proper rest and alternating types of activity as suggested. I may appear well whilst out, but if any of you saw me today you really would get a shock. So, I don't go out very much, unless its something I really really want to do that is worth days of symptoms and struggle to even look after myself.
For me, the boom bust cycle is simply the only way I ever get to do the things I love, and after 9 years of trying every suggestion thrown at me by experts, other people with this condition etc and nothing working, then I have no choice but to simply continue trying to pace, and going for bust for the sake of actually enjoying myself. Although I do keep this to a minimum..
Other pluses this last week, I got more images awarded by the National photographic society which I'm really pleased at. Its autumn and the colours are finally starting to show, so I'm itching to get out to stroll through trees again :). I have the opportunity to go away to Northumberland again if I can find someone else going from my area who can offer a lift. I made new friends even if I cant get out and see them, I can chat online. I have lots of photos to edit and share. I enjoyed mushroom spotting for the first time in years - I used to spot mushrooms and identify them on lake district walks over 10 years ago, so an old interest rekindled. Whilst the weather left a lot to be desired this weekend I still grabbed the opportunity to take night sky photographs to include a lovely wild landscape, something I would love to do more frequently,
Enjoy the rest of autumn everyone, its my favourite time of the year with all the colourful foliage, berries and mushrooms.
