Health and Disability

(Be) (you)

 I’ve been listening to James Bay this week and loving this song “best fake friend” which got me thinking…

How much do you show the world? How much do you show your friends, family, partners? Who gets to see the real you?

I think that a couple of years ago I would have said that maybe only 2 or 3 people actually knew how I was feeling, how my health was affecting me and how I was trying to cope with it’s deterioration and even then I don’t think that I told them everything. Now I’d say that the majority of my friends and family know what I am dealing with day to day, and the rest of the world gets to see the version of myself that I put out there online through this blog and social media and the “I’m fine” or “I’m good thanks” responses that I come out with a lot of the time if I either don’t want to go into how I’m actually doing, or I don’t think that the person really wants to hear the full answer.

I’ve changed my approach to my friends and family pretty recently as I’ve actually had to ask for help and I don’t think that they really understood how bad it was getting. In 2014 when I had to take 2 months off work and finally managed to get my pain meds to the correct level (scarily high) I think that I shocked a few people as I have a tendency to keep things to myself. I pride myself on being independent and hate having to ask for help or share too much in case of being judged or thought of negatively. So coming out and telling people that are important to me that I’ve been struggling to do day to day tasks like chopping up food, lifting a kettle, getting in and out of the bath, driving and getting on and off the toilet was a huge thing for me. I still worry about it and sometimes keep things to myself depending on how I view it, my own reaction to not being able to do something, or describing the levels of pain and fatigue that I’m experiencing. So listening to James Bay’s song made me think about how much we all hide from each other, people with and without chronic illnesses, we all show a version of ourselves to the world and keep things to ourselves.

I’ve been getting messages recently asking if I’m doing as well as it looks from Facebook, and I’ve replied honestly with yes. My outlook on life is positive and upbeat and that’s what I share on social media. I put on the nice things, when I do something with friends or family, when I have relaxing time to myself, when I go to the cinema or have a meal out and when I do something fun with my business. I don’t put on when I’m exhausted and in pain, when I’m getting food parcels from my sister as I haven’t got the energy to cook, when I’m struggling to keep my eyes open when I’m driving so I have to cut things short, when I leave places early, ask for help driving, cancel on people or go to bed at 6.30pm as I’m completely out of spoons for that day.

When I wake up and still feel as dreadful as I did the day before I “put my public face on” think about the day ahead, find something to look forward to, even if it’s just that I’ll be on the same lunch as someone at work that I like talking to, or that I can watch a video of my nephew singing happy birthday to me, or that I get to have an early night that night. Then I get ready, drive to work, take all of the fun and laughter that I can from the people I work with, give out all of the joy and happiness that I can and get through the day with my things to look forward to. I’ll always have new things happen to make me happy, maybe a message from someone saying hello, a picture, a funny quote on my timeline, someone has shared my blog/post/tweet, someone wants to speak to me about my business. There are always so many things that keep me going throughout every single day and I always write as many as I can remember in my happy book before I go to bed.

Henry David Thoreau is quoted by Robin William’s character in Dead Poet’s Society (one of my favourite films),

“I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms.”

I want to “live deep and suck out all the marrow of life” I don’t want to stay indoors all the time and I am perfectly willing to deal with the consequences of these actions.

Last weekend I went away for 2 days in Birmingham for training. I really wanted to go but knew that it would be a big challenge for me, so I booked the week after off work to make sure that I had rest and recovery time. I took time to myself in the evenings, went down the night before so I was getting a good night’s sleep, I even asked for the seat at the end of the row on the second day so I’d be more comfortable and used my stick that day. I also asked for help driving home as I knew if I’d done it I’d be in bed for my week off work and not be able to enjoy it at all. This took me thinking about myself and my health, being my own true friend, as well as telling the people that I was with how I was doing and being honest enough about my limitations to ask for the help that I needed. I still had on my smile, I wouldn’t call it “fake” as in the song, but I know that I do have a “I’m fine” face that I wear a lot of the time, but I know that it’s coming down more often now.

I found this article https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000602.htm which says that you should tell people about your health condition, that some people will need to know to make sure you’re safe, like co-workers being aware of medications in case of an emergency. It goes on to say that you will need people to understand when you need to take time for self care, or have to ask for help. It doesn’t however, tell you how to do this! Changing habits are difficult enough without having to change how you interact with the people around you whilst dealing with a chronic illness!

Another thing that I came across this week was an ecard about chronic illness, it said (in a far more aggressive way) “please don’t tell me you hope I feel better soon, an incurable chronic illness doesn’t get better”. I liked the sentiment but not the tone and started to think about how I talk to my other “spoonie” friends, and does it annoy me when people offer sympathy? I came to the conclusion that I think it’s nice that people wish me well. I know that my condition is variable, so some days I will feel better than others. I think that it’s the comparisons that frustrate me, when someone says “I’ve got/had a cold (insert other short term condition) yep that’s awful for you, I bet you feel/felt rough, now try and imagine feeling like that everyday of your life and still functioning. It’s only when I get to the next level up from that that I have to take time off work, cancel things and become a hermit. I think it’s just very difficult to try and understand if you aren’t coping with it day to day. It does get me down, fighting constantly and struggling to manage every aspect of life is exhausting and draining mentally and physically, but I choose the marrow of life, I choose my attitude, I choose what I let annoy me and what I put a positive spin on. I get that everyone’s problems and struggles are there own and I cannot deminish how challenging any health problem is for someone else as I am not in their body and mind living their life. I like people’s support, I like my friends and family hoping things get better for me. I dislike limitations, I am always going to push and challenge myself as I have that type of character. I will adapt my goals and dreams if and when I have to, but please don’t limit me in your minds. If I have faith in what I can do then so should you. You should also have faith in yourselves!

This article got me thinking http://psychcentral.com/blog/archives/2014/07/20/8-ways-to-live-with-a-chronic-illness/ it was number 8 that stood out for me. Find your tribe. I read something a few years ago about having a team, people who you can turn to, who support you and you enjoy and value in your life. I wrote a list of my team and I still have it on my phone. I need to update it as I have made some amazing friends in the last year and feel truly thankful that I have such a large number of people in my life that I can count on. I am also expanding my tribe through this blog and my social media circles which is very exciting as I can see the impact that I am having in the lives of others with similar conditions and daily challenges to me. The tribe is supported through me, but I’m also supported through them. Through you! Thank you so much for reading, following me and getting involved with the stick girl community. 😍😍

And remember “no you don’t have to wear your best fake smile, don’t have to stand there and burn inside, if you don’t like it. And you don’t have to care, so don’t pretend, nobody needs a best fake friend, don’t hide it”

Vic xx

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