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This week I did something I’ve not done since the start of 2018. I travelled to London. If you follow my life or story, you’ll know that I suffer from chronic illness and that I’ve been particularly unwell this year.
Chronic illness had stopped me in my tracks on many occasions and it’s caused me to reevaluate what I can and can’t realistically do. It’s something I am still learning and I’m still in the process of working out my limitations.
I’ve spent the last six to eight months mainly in the home with occasional visits to the supermarket, to events, to visit family and attend church.
I’ve attended more medical appointments than I care to think about and with each adventure out of the home comes the realisation that my body cannot cope with very much. It’s taken a long time to try and work out but I’m getting better at knowing what I can and can’t do and how long I need to rest beforehand and after I leave the home.
For example, if I’m going to the Dentist or to see the Doctor, I will need to physically rest in bed for a good 24 hours before I go out and usually another 24 hours afterwards.
When I go out and use a wheelchair I can manage a half day and return home and sleep. I will then need another day to recover but will be able to get through. However if I go out and walk, something I can do (but not consistently) It might take me many days to get over this.
So I travelled to London on Sunday. I didn’t do much walking. I was dropped off by my husband at the station and walked onto the train. I then had a two minute switch at Manchester and finally walked off the train at Euston. I was booked into a hostel next door to the train station and by 6pm I was in bed exhausted.
I had not done much physically but the 3 hour journey has worn me out. I slept all evening and had enough energy to attend the Instagram Headquarters in London the next morning.
On Monday morning I made the journey from Euston to Oxford Circus and walked from Oxford to Rathbone square. It took some time and by 11am I began flagging. I was feeling a little sick and nauseous and exhausted but managed to get through the conference which ended at 2pm.
I really enjoyed the event hosted by Instagram and Mumsnet and am glad I attended. By the end of the event I was feeling the pain and tired. I walked back to the station, stopping at Smiggle for a last minute Christmas purchase and then caught the train back to the YHA.
I have to admit, when I came out of the underground I was suffering badly. I could feel pain throughout my body and struggled. I needed to sit but there were no seats to rest I had to keep going at a snail pace but I did it. I finally got into the station and could rest until I was ready for the final three minute walk to my room.
Arriving back at the YHA I went straight to bed. I was shattered. Luckily I brought plenty of pain relief with me so was able to take some medication and go to bed. I slept all afternoon, from 3pm right through until 8pm. I then went back to bed late.
On Tuesday morning I was in too much pain and too physically weak to get up. I wasn’t hungry and was happy to miss breakfast and lunch, instead snacking on two rice crackers which were in my bag. I had plenty of water so drinks were sorted. I ate food in the evening and then went back to sleep again.
I slept most of the day and although I had hoped I’d be well enough to visit a few shops, I was not and decided to keep resting.
On Wednesday I woke up in pain and shattered again. Again I stayed in bed all day, right up until 3pm. I slept, worked on the lap top and talked to my husband over the internet.
By 4pm I decided I had enough energy to venture out for dinner. I didn’t go too far, a few minutes away actually. I visited Wagamama, two shops and had a quick glance at the Market before returning to my room. I was too exhausted.
It was lovely eating out, but I was shattered once more. Had I more energy I totally would have gone to the West End in London to watch a show and I would have spent my last night in London having fun but I was still exhausted and I needed to go back to bed.
So, back to bed I went until about 10pm. I then woke again in pain and decided to do a little more blog work. So here I am writing about pacing myself and knowing my limitations.
The reality is if I want to go somewhere like London, I need at least four days to make the journey. I need plenty of rest and I am limited as to what I can do.
I have enjoyed myself. I enjoyed trying new food and just resting in a different environment. I know that if I need to go somewhere for even half a day, I will suffer a lot for it so I need to pick and choose what I do carefully.
Was this journey worth it? Yes, I had a good time. Will I do it again? Yes but not for some time. It’s too much on the body.
When I go home, I’ll keep working on pacing and learning what I can and can’t do physically. I have no more plans to leave the home before Christmas except for medical appointments. I am going to use my energy over the next two weeks to recover, prepare our home for Christmas and to spend time with Sylvia.
Its been good coming out but I am ready to go home and ready to renew my pain meds at the Doctors as I have really needed them this week.