What was I saying about balance?

18 May 2023

I may have spoken a little too soon!

Weeks of learning how to pace with the experts, phasing back to work, hydrotherapy, physio, medical appointments and starting to seeing friends and family again. The plan was to building up slowly and take things at my body’s pace.

I started phasing back to work on the 2nd May just a few hours to start with. I was beginning to feel stronger, in that moment I threw pacing out of the window by trying to function at the level of the previous version of LBH…

It was always going to go wrong!

THROW THAT PACING MANUAL OUT OF THE WINDOW

I had booked a trip in 2022 when I was feeing good, low pain, lots of energy and things were on the up. The trip was to my 'Happy Place’, I wanted to share it with a few of my friends as a celebration for my special birthday in July.

However, in February 2023 everything changed health wise, I wasn't feeling good, I had high pain, no energy and things felt like they were falling apart. I couldn’t cancel the booking, and didn’t want to let anyone down. I had spent hours planning it meticulously and was determined to make sure that my friends all enjoyed their trip. I remember saying to my physio how worried I was about the trip and what I could and couldn't manage. We made a plan together, but I still felt nervous!

You can’t organise the weather of course, but there were many highlights that I’ll always treasure: sleepovers, dancing, watching the sunrise, incredible views and rooftops, food and drink. Heartfelt sharing, breakfast together, hugs and laughter. I really appreciated my friends coming away with me and leaving their families and work and responsibilities for a long weekend.

However, I hadn’t quite appreciated the difference travelling with a group vs with NBH with a chronic illness and in rehabilitation with my diaphragm. NBH explained to me that my friends only see me when I’m feeling at my best (my best still isn’t 100%). They see me when I’m in less pain, positive and when I have energy. He said he knows how hard it is on a day to day and the true pain and difficulty. He said when we travel, it doesn’t matter if we don’t make a booking, or you need a lie in or to sleep in the afternoon because you’re in pain. It’s different when you want everyone to have a good time and override your body’s needs.

I want to say I tried to nap, follow my sleep routine or to take time aside to recoup but I didn’t. One day I went back early to the hotel as I had a migraine and tension headache. I was feeling pretty stressed and overwhelmed so one of my friends walked back with me to the hotel. She gave me a hug and encouraged me to feel my feelings. I had a little cry on the way back but even then couldn’t cry in the way I needed to. I had the longest shower when I got back and that did help a bit. I just really didn’t want to ruin the trip for the others.

Ultimately, it felt like I did. By not looking after myself, not setting boundaries and letting others know what I needed. I ended up not handling a few things very well during the trip. I was so determined to feel better and just be the old me, not make any adaptations to the weekend, this was so foolish in hindsight.

One moment where someone didn’t hear what I had said, turned into an awful situation. An unnecessary confrontation (anyone who know’s me well, know’s this is not what I enjoy at all. I avoid it at all costs). It felt so unjust, as what I’d said with such a positive intention was just misheard. It left me feeling so misunderstood, so unloved and uncared for in that moment I watched how things unravelled in front of my eyes. I really didn’t have any excess energy to deal with something that didn’t need to happen. I was boosting a positive situation in my mind, doing my LBH championing of others and saying how I loved something for someone else and it all just smacked me back in the face! Ugh! It hurt...

I’d like to say this was the only time this happened that weekend, but it made me realise that me not socialising so much over the past few years has impacted me more than I realised. I don’t often go out anymore so I can manage and protect my energy levels. I also realised that people not knowing me as well as I had thought, left me feeling pretty lonely and isolated. There was a moment at the airport on the way home where I looked around at our meeting point and felt so alone. I made a huge mistake of appearing to be LBH 1.0 who doesn’t need anyone ‘’little miss independent’’. This isn't serving me right now.

I haven’t spent a lot of time with others since my diagnosis in 2018, then lockdown hit. I hadn’t realised that I’d be so easily misunderstood. NBH and a couple of my closest friends don’t even have to question my intentions, they know I’m kind and compassionate and I always put others ahead of me (to my own detriment, I am learning). I can hear them say to me ‘you don’t have to explain’ I get you, I hear you, I understand what you meant. That’s so reassuring, especially as I feel like I’ve lost myself a little in my health journey, I quickly lose confidence and the imposter syndrome sneaks in.

Things that really helped me:

• Hugs from friends

• Laughter - real genuine belly laughs!

• Seeing my friends happy and having fun

• Friends helping to lift my case (although felt so bad not doing it myself and tried a few times)

• Taxi’s instead of walking to places I would have in the past

• Washing my hair and making an effort to dress up

• Sunshine, sunrise and sunsets

• My friend helping with the taxi's and arranging a night out

• Thoughtful gift from my primary school friend on the plane with so many thoughtful goodies!

• Balloons, cake and special birthday balloon arranged in the room by my lovely friend!

• My friend mediating a difficult situation and making me feel loved

• My other friend coming back with me when she sensed I wasn't great and listening to me

• Dancing and music

A few things I struggled with:

• Lack of sleep

• Eating rich foods daily

• People pleasing

• Too much activity (for me especially without sleep)

• Fatigue

• Chronic pain

• Not saying ‘no thank you’

• Accepting my limitations

• Trying to keep up with able bodied people

• Opening up and letting my feelings be heard - ouch it was hard but necessary

I don’t regret going for all of the special moments shared, lessons learnt, friendships tried and tested and up levelled, personal growth and letting go. I just wish in hindsight i'd shown how hard it had been for me earlier in the year and given a basis for others to truly understand.

A few tips I’d give for any chronic illness warrior travelling with friends or with your partner:

• Pre plan time to rest ahead of the trip and on your return if possible. I did this and it would have been harder if I hadn’t. I took an additional 2 days off work on my return with the advice of my physio to deal with the ‘payback’ pain and fatigue. I cancelled my hydrotherapy sessions for the week I returned in order to not overload an already overloaded body. The pain and fatigue lasted weeks for me but having that time made a huge difference.

• Come to a place of acceptance of your ability before you go away. Share this with people you are travelling with and don’t be afraid to sound boring or difficult! I didn’t do this but it would have been easier if I did.

• Promise yourself time out each day for self-care, alone and away from a group to recharge. A quick walk around the block, a dip in the pool, a meditation or an afternoon nap.
  

• Make sure you bring snacks and always have water with you, you don’t always know when you’re going to eat or whether you will have water available but this might help if you’re out all day. I brought some hydrate sachets to keep me hydrated and a few dairy free snacks would have helped me as some countries are not very dairy free friendly! Beautiful cake shops on our trip but not with dairy free options to eat so this may have helped with the tension headache, who knows?

• Don’t pretend you’re ok if you’re not! There are no prizes for being brave, especially if everyone thinks you’re fine (one of those invisible illness problems). By the end of the weekend, I could pretend no longer and that’s how bad it was. It just came out whether I wanted it to or not. So be open and honest and take some time out if needed.

This was a hard one to write, it's taken nearly a month to complete. I think it will help others so I am willing to share this.

Take Care

LBH x