The chink of cups, the coffee grinder, the gush of boiling water into a teapot, general chit chat going on all around. I am waiting for a friend to arrive. I am exhausted from the sleepless nights I have had tossing and turning because of the pain, however I have made it here today, to spend some time with a friend. This is most difficult to do especially when everything takes so much more energy than it used to.
Here she is, she has just arrived, flouncing in with her pretty dress on and summer high heels, looking beautiful as ever – make up perfect, nails done, and not a hair out of place. Late as usual, hey I don’t mind at least I have been able to sit and wait just inside the cafe.
So we go to the counter and order – she has a great slice of white chocolate and raspberry cheesecake with a drop of cream at the side and raspberry drizzle, and for a drink she orders a hot chocolate with all the trimmings (marshmallows, cream and chocolate sprinkles). It looks so delicious, and I yearn for the same, but I know if I so much as put a mouthful inside me I will end up suffering for days with my stomach. My digestive system, like my left leg, has decided it will not work properly so here I am on a Low FODMAP diet as prescribed by my GP just to alleviate some of my more troublesome symptoms.
I look at the selection of goodies – there is nothing there that is both gluten and dairy free, so no goody for me on this occasion. I look at the hot drinks menu, scanning for something that may be dairy free other than black tea – not a drop. So I tentatively ask the staff of this very small and busy cafe “Do you have any herbal teas?”
“Yes, several” and she reels off a list of 6 or 7 herbal teas, they don’t have them on display due to space behind the counter being small.
I nod my head, knowing that there are a lot of herbal teas that have apple in them or some other fruit I should not have because of my stomach issues.
She finally says “and we have Earl Grey or Green Tea.”
Well my decision is made “a cup of Earl Grey please, with no milk”
With all the people nowadays that have special dietary requirements you think cafe owners would be cottoning on to this and making some effort to stock products that people can eat, such as gluten and dairy free – especially as I would imagine these to be the most prevalent.
So with our tray laden with cups and one plate! We go and find a table. My friend wants to go and sit near the window with panoramic views over the lake and the mountains in the distant. I make a beeline to a table more on the edge.
“Come there’s a table free over here,” she says.
“No this one will do”
“But why,” as she shakes her head perplexed. “Surely you want to sit and look at the view, isn’t it amazing.”
I can’t actually see the view because the cafe is busy and I am in my wheelchair. I am also getting a bit fraught with everyone cutting me up and tutting because I take up too much space in their eyes. “I’ll see the view when we go outside, let’s just sit here.” Resigning myself to the fact that yes it would have been nice to sit and have my drink enjoying the view, but practically it was impossible for me to weave through tables, chairs, and people to reach the table she wanted to sit at. She could have got through with no problems, but I wouldn’t have in my wheelchair.
Reluctantly she sat down at the table I was near in a huff, screwing her face up in disgust that she could not get her way. “If you had brought your crutches we could have made it through and be sitting there now enjoying the view instead of being stuck here almost in a corridor.”
Woah – taken back and stunned at the attitude from a supposed friend who I have gone out of my way to meet. Who I had got out of bed for. Who I had dragged myself to the bathroom and showered (yes, I didn’t dry and straighten my hair because I didn’t have the energy to). Who I had put on hold other plans for later on the week because I know this one trip will use most of my spoons. Taken back because of the selfishness, or severe lack of understanding on how difficult it is to get through a crowded place in a wheelchair. Most of all disappointed because I did want to look at the view whilst enjoying a catch up with a friend and did she really think I wanted to sit here practically in the corridor.
Any how, she straightens her face and starts chatting about what she has been doing this last week, “I went shopping on Sunday with my hubby, tried on loads of clothes and came away with a bag full”. “I was out on a pub crawl on Saturday night with my mates from work, it was great – we ended up in this quaint little place with all little nooks and crannies at different levels, you would have loved it, we had a ball.” “Had a great walk along the beach and up the cliff with my dog, you should have seen the rock pools and all the little critters.” “Oh, do you like my hair, had it done at the hairdressers today because I am going to a black tie ball tonight with hubby’s work, can’t wait to let my hair down and have a dance later.” “What have you been up to?”
Well, what do I say to that – “Yes, went to work, came home, had dinner, went to bed and got up and did it all over again!” So I focus on the one thing that I did different this week, the only one thing different from the usual routine of my life in pain where I hardly do anything of what I used to. I used to be the same as my friend, be able to work and then fit in other stuff around work, nowadays though I tend to find on the days I am working I crash most nights around 8pm – no time for socialising there then as I don’t get home until 6.15pm. Then on the days I am not working I am either crashing because I have over done it, or catching up on things like the gardening, or going out with the family, or sailing (can’t do all three on the one day like most because of the pain I am in, in fact can’t do all three in a week most times!) and then crashing again. My whole life sometimes seems to revolve around making sure I have time to crash and recuperate for the next small thing in my life.
It may sound like I am jealous of my friend, I am not so much jealous as disappointed that I can’t do all that I used to. However there are benefits to my new, forced by health issues, way of life and that is I take in what is around me more. I am more mindful of the moment, enjoying every last bit of the moment and not thinking about what will happen once the moment is over, nor of the consequences I will suffer because of those few hours of bliss, the pain I will be in and the exhaustion I will feel. I appreciate life more, I am not rushing here, there and everywhere, trying to be everything to everyone, I focus only on the time I am in and if something has to give later then so be it. That doesn’t mean to say I do not pace – it is only by pacing that I even get those moments. So every outing, every coffee with a friend, every night out, means so much more to me now because I am only focused on that moment when I am there, I am not thinking about what it will be like when I do this, that or the other later on in the week. Each individual moment spent doing something I love is precious. I don’t think you can really appreciate this until you have suffered with an illness or chronic pain.
So I answer her question “I went sailing on Sunday, the sun was out, the breeze was just right and I enjoyed each and every moment. I saw a couple of seals sunbathing on their backs in the water, they were very inquisitive of the boat, although they dived under the water as we neared them. Oh, saw a porpoise too. Enjoyed having a spot of lunch just bobbing there on the sea. Really quite the perfect day.” I smile to myself with the memories, and think how much more depth my life seems to have now.
“You always get to do some great stuff, I wish I could go sailing, I never have the time for anything like that. It must be great to have all that time on your hands these days, what with you working part time, you are so lucky you can sit at home one day a week and do nothing.”
How wrong can she be – she does not realise that living with chronic pain is a 24/7 job, it does not go away, I get no holidays from it. Not only am I in pain 24/7 I am holding down a job like she is. I have no more extra time than she does really, in fact I get less because I have “forced” down time where I have no choice but to stop, put my feet up and rest. I so wish on my day off in the week I could go out in the garden and do more jobs out there, get my garden looking beautiful again. Or go grocery shopping so we don’t have to do it at the weekend or one night in the week. Or even take the dog for long walks again up the cliffs and along the beach. No, on my day off, 9 times out of 10 I am sat on the sofa recuperating ready for work again, and saving my spoons for the weekend when I can do things with my husband, so we have good quality family time. I would try to explain this to her but I have been there before, so I just nod and say “there is a difference between wanting to rest and being forced to rest. The one you have a choice over, the other, no choice whatsoever. I know which I would choose any day, and it certainly wouldn’t be the one where I am too exhausted to do anything”.
Using her hands to express herself “making the kids lunches, running them to school, by the time I have been to work and done the grocery shopping, cleaned the house, cooked the dinner, I am exhausted too.”
“But that’s a different type of exhaustion. That’s a healthy type of exhaustion that you’re meant to get when you are cramming loads into the day. I wish I had that type of exhaustion and not the type brought on by being ill. The type where no amount of sleep will ever cure it. Do you wake up in the morning and feel exhausted?”
“Yes” (shrugs her shoulders) “after a night out I would.”
“Well there lies my point – you wake up exhausted after a night out – and you go out maybe once or twice a week if you can get a babysitter to mind the kids. I wake up exhausted every day without the enjoyment of a night out, and I can’t get a babysitter to mind my pain! So I never get a break”
“I think I see what you mean, but we all get exhausted.”
“Exhaustion when you are sick is different to exhaustion when you are healthy. I am not saying you don’t get exhausted, what I am saying is try going out every night of the week for months on end, don’t stop even when you want to because you are bored with it, or you are too tired to go out. Keep doing this over and over again, now imagine the exhaustion – it comes but never goes, you can never get enough rest to recuperate. That is what I have been doing for six long years now.”
“Oh I see what you mean now.”
So we chat a while longer, talking about other things, like the weather, holidays, and all the usual stuff two friends would talk about, until we have to part ways. When we leave she offers to wheel me to the car as she can see I am now very tired, I graciously accept her help. She kisses me on the cheek and gives me a hug before running across the car park to her own car with a promise we will meet up again soon.
She goes back to her hectic life where nothing stops apart from when she wants it to, and I go back to mine where everything I do is carefully paced so that I can lead some sort of a life through the pain that never stops.
Although the experiences I have written about are true, the actual scenario played out above did not happen in real life. I have taken little snippets from things that have been said or done over the last six years and brought them all into this one blog for the Writing 101 assignment – Give and Take – a post based on the contrast between two things.
Please don’t be offended if I have used anything that has happened between you and I, it has only been used here for illustrative purposes and I do not hold it against you.
The cafe, counter staff and the friend I meet with are all fictional characters.