Tag Archives: Living with Chronic Illness

Fourth & Final Liebster Award: Cars, Cambridge & Kindess!

25 Oct

liebsterJulie over at Julie’s Spoonful of Sugar was my fourth and final nomination for the Liebster Award. Julie suffers from Fibromylagia and blogs about life with a chronic illness as well as much more besides. She has an online shop where she sells her handmade soaps. I love seeing posts of Julie’s soaps, she makes them in so many different shapes and colours. Julie is a great example of making the most of life and not letting a chronic illness get in your way.

Thank you Julie for your nomination, I am touched and honoured to have received it. When I started this blog I had no expectations as to who would read it or if anyone would! So to now have loyal readers who even nominate me for awards means the world to me 🙂

1. What is your earliest childhood memory?

Looking round the house, that was to become our family home, for the first time, with my Mum, Dad and sister. I remember the colour of the carpet (beige/cream) and the layout of the furniture in the lounge – the sofa was pushed back up against the wall whereas my parents have bookshelves lining the wall so the sofa sits forward slightly. I was two and a half I think at the time.  Odd what you remember!

2. If you were an animal, what would you be?

An Impala, photo source: animalstown.com

An Impala, photo source: animalstown.com

An Impala! They are strong, graceful and quick! This was my answer to this question in the job application for my ‘current’ job as a lawyer! Probably more appropriate these days is a cat who spends all her time snoozing!

Coops! Photo credit: www.theredbicycledesigns.com

Coops Look-a-Like! Photo credit: http://www.theredbicycledesigns.com

3. What was your first car?

A red Mini Cooper with two white stripes across the bonnet, roof and boot (trunk to my American readers)! Known affectionately as ‘Coops’. Not strictly my car, technically Mr B’s but what’s his is mine and mine is mine!! Hehe! This is our first and current car. I don’t drive very much at the moment because of ME/CFS which Mr B is secretly very happy about given I reversed into a pillar the last time I drove our car….oops.

4. What is your current obsession?

I’ve already admitted to having an obsessive personality! Read my post about that here. Food and cooking are probably my current obsessions. They just pip blogging to the post I think. I am still obsessed with looking up vegan gluten free baking recipes. I’m also starting to be excited obsessive about Christmas, looking for suitable recipes etc! Yes yes I know it’s only October, but I have a lot of quiet time on my hands!!

5. What are your top three favorite hobbies or activities?

Cooking/baking, Yoga and Blogging. Not necessarily in that order.

6. What is the color scheme in your living room?

White walls, tan leather sofa and chairs and oak furniture with a smattering of blue, white and red cushions (I may be a little obsessed with Union Jack Patterns – I’m not overly patriotic, I just like the ‘clean’ colours….)

7. Do you consider yourself an auditory, visual, or kinistetic learner?

I little of all three, but probably a little more visual than anything else.

New Court from the Backs of the River Cam. Photos courtesy of St. John's College, Cambridge Official Website: www.joh.cam.ac.uk

My Cambridge College Photo courtesy of St. John’s College, Cambridge Official Website: http://www.joh.cam.ac.uk

8. What one event has most influenced your life?

Getting the grades to go to Cambridge University as an undergraduate – it gave me the opportunity to earn a wonderful degree which helped me springboard into a good job. It’s also where I met Mr B and ten years on, we are still together, so I think that’s a pretty big influence! ME/CFS is also having a pretty large influence on my life. It has really changed me as a person and made me stop and re-evaluate what I want from life. It has resulted in so many changes both in me as a person as well as significant practical changes such as where Mr B and I bought our first home together. I would say that my illness is the biggest influence on my life but as I’m still living through it’s full influence is not yet clear as I’m still living with it’s ramifications which change and develop everyday.

9. Do you prefer salty or sweet snacks?

Can I say both?! Ready salted crisps with a cube of chocolate is very nice!! I guess it depends on my mood, sometimes I like salty and other times all I want is sweetness.

10. What random act of kindness by someone took you most by surprise?

I’m finding it really hard to think of an answer to this one; which makes me sad in a way. Kindness is so important. I remember a time when I was on the Underground tube train with my Mum in rush hour. This was over two years ago, fairly early on in my illness when I had no idea of how to manage it, i.e. I was still working, commuting by Tube etc. Stupid! But that’s a whole other post. Anyway, the train was really busy, Mum and I were having to stand in the aisle and a guy offered my Mum his seat. My Mum replied ‘thank you I won’t but my daughter needs to sit down as she is not well’ so I got to sit down. My Mum and I joked afterwards that she had entered that phase of life where people gave up their seats for you. My Mum is a feisty 62 year old, who is anything but a little old lady needing a seat despite her grey/white hair! So that was a lovely act of kindness and I guess it goes to show the society we live in now where people to do not always give up their seats for older women which is where the element of surprise comes in. 

Step away from the computer!

29 Aug
Step Away From The Computer... Photo credit Morgue File User wcizmowski.

Step Away From The Computer… Photo credit Morgue File User wcizmowski.

‘Step away from the computer’! ‘Put down the mouse and step away from the computer!

This is what I was bellowing at myself inside my head a couple of days ago when I stayed on the computer too long and little miss ME/CFS became enraged.

Let’s take a step back and I’ll try to explain. I had been out for my walk – for a whole 12 minutes…what with the trip to France and a bad cold I’m back at the beginning with my paced walking, but that’s a different story. So yes I’d got back from my walk, made myself a nice cup of green tea and got myself a little snack (apple granola bar in case you’re interested, made by my Mum last week, recipe coming soon).

Armed with my tea and snack I thought I’ll sit at the desk and faff on the internet for 20 minutes before having a rest. I noted the time. 3:40 pm. Okay easy at 4 pm I’ll stop and have a rest. Perfect. And off I merrily went into my WordPress reader catching up on some of my favourite blogs.

And this is where things began to unravel….

I didn’t set a timer on my phone for 20 minutes which I usually do. This was school girl error number one. Without the timer bleeping and buzzing away at me 20 minutes later I had nothing to yank myself back to reality except of course the old chestnuts of common sense and listening to my body.

The 20 minutes quickly passed and before I knew it, it was now 4:10 pm. I needed to stop and rest. I knew I should but I didn’t want to…so I kept reading, totally caught up in the wonderful world of blogs (see really, this isn’t my fault at all, it is in fact you guys and your blogs! Yeh right….don’t think I can pass the buck on this one).

I knew I should stop. My body was screaming louder and louder at me. My shoulders felt so tight and sore and my arms were aching like mad. My upper body had had enough of being upright. And then there was my neck. The whole of my neck ached and it hurt keeping it vertical. The little vertebra of my cervical spine felt like they may snap any second.

Speaking of aching and stopping. My 20 minute timer has just gone off. My neck is hurting. Time to take a break and continue this post later.

I’m back! It is now the next day, Friday. I never got back to blogging yesterday as had too many other bits (like unloading the dishwasher) to squeeze into my activity slots. Life does tend to get in the way doesn’t it?! Especially so when you have limited energy with which to do stuff.

So anyway back to my story, there I was on the computer in increasing pain. ‘Step away from the computer’! ‘Step away right this second’! It was another 10 minutes before I actually gave in and did walk away and rest. I paid the price for this little error with increased neck, shoulder and arm pain for the rest of the evening. And several days later, today my pain levels are still much higher than my usual.

You might be thinking ‘Jess you’re stupid’! And yes to some extent that may be true. This is why I have a daily routine with a set sequence of timed activity and rest. The whole point of pacing is to prevent slip ups like this ‘computer-gate’ incident; to avoid boom and bust symptom cycles. Oops.

But, I’m not stupid. And anyone who thinks I am hasn’t been in this situation. You try having to stop doing something you’re enjoying before you’ve finished or before you want to. Let me tell you it is really really hard and really really frustrating. It takes an awful lot of self discipline and willpower, two characteristics I, admittedly, could do with building up.

You might think ‘if she was in that much pain she’d have stopped’. Again maybe you’d have a point. But then again maybe not. Those of us who live with chronic pain, who feel pain each and everyday, develop the ability to carry on, to push through. If I stopped the moment I felt pain, or if I stopped pre-emptively before the pain spiked, I would basically do nothing, or very little at any rate! I wouldn’t blog very often, I wouldn’t wash my hair, I wouldn’t reach for the tea bags out of the cupboard. So basically I think I have developed a baseline pain tolerance and this tolerance allows me to keep going to some extent. My baseline is not no pain, it is some pain but not so bad that it will cause a spike for days after. That’s my theory anyway.

But sometimes I am just plan stupid / stubborn / silly and lose all common sense and the connection between brain and body goes awry. And I continue doing something when I really shouldn’t; when the pain is way beyond my baseline tolerance and will leave me suffering for days after.

So yes, I fully admit my little extended escapade on the commuter was a mistake. But every so often we all make mistakes and we learn from them. I’m going to learn from this, dig in deep, find my will power reserves and get back on the pacing and daily routine horse and ride off into the sunset!

And there goes the 20 minute timer, time for me to stop.

Food Glorious Food: making the most of my loss

18 Aug
Food Glorious Food! Photo by Jess B.

Food Glorious Food! Photo by Jess B.

I am pleased to report that the waves of treacle have subsided slightly and I am feeling better than I was earlier in the week. THANK GOD. Not quite back to my ‘usual’ level of pain and fatigue but slowly getting there. I plan on doing a post about what caused this latest flare of little miss ME/CFS (other than the fact that she’s just plain mean) when I thought I’d done everything right to prevent precisely that kind of post-holiday flare but for now I thought I’d distract myself by posting about something I love.

One of the hardest things about having ME/CFS, okay perhaps not one of the HARDEST, but certainly a hard thing for me, is not having the energy to cook. I really miss not being able to cook, bake and basically play in the kitchen.

I LOVE food. And when I say LOVE, I really mean LOVE! If I had to choose between Mr B and food….arrgh it’s like Sophie’s Choice! (Of course I’d choose you honey 😉 )

Just a few food mags from my vast collection! Photo by Jess B.

Just a few food mags from my vast collection! Photo by Jess B.

Even though I can’t cook much thanks to ME/CFS, that doesn’t stop me from indulging my passion for it in other ways. My coffee table is overflowing with well-thumbed foodie mags and the majority of books on our bookshelves, it wouldn’t be an exaggeration to say, are recipe books. And then there’s food blogs…oh my, what a wonderful world the internet is. Literally I can be lost for hours perusing latest posts (here are some of my current faves – Oh She Glows, Veg Hot Pot, The Intolerant Gourmet.) Isn’t it lucky than I have hours to spend on such a low energy activity. Maybe the world is nice after all.

What I think Mr B and Dad hear us chatting about! Photo source Morgue File User HotBlack

What I think Mr B and Dad hear us chatting about! Photo source Morgue File User HotBlack

If I’m not reading about food then there’s a good bet I’ll be watching a cooking show on TV or chatting with my Mum or sister about it.

My family are visiting this weekend and I suggested that as my ‘activity’ for the weekend we take a trip en famille to Whole Foods so I can stock up on all the health foods that ME/CFS dictates I eat. I asked my sister if she minded if that was how we spent some of her last weekend in the UK until Xmas (she flies back to Philadelphia on Tuesday, don’t get me started sobbing about that…), Lou’s reply was, ‘it’s a supermarket, full of food, of course I want to go, I love supermarkets!’ We are from the same Mother after all! I think my poor Dad and Mr B may wish we’d just shut up a lot of the time (tho that may not just be down to the topic of our conversation…)

Food is in my blood. My Mum loves food and is a wonderful cook. In her 20s she became a ‘brown rice lentil raving veggie’ (my Dad’s words not mine as that description could apply to me too) and has never lost her love of pulses, beans and legumes.  We were brought up on good whole grain, home made, healthy food. Oh and a good dose of homemade cake too! Though we did eat meat we still ate some veggie meals. Mum had to let her veggie side go when she met my Dad in her early 30s, he believed that if he didn’t eat meat 3 times a day he’d die (or something to that effect!).

Mum’s Mum (known as Nanny Jess) was also a wonderful traditional cook and served as a cook in the armed forces during WW2. I remember leafing through Nan’s recipe books from back then, how to make chicken soup for 500 men and the like! I have many happy foodie memories of my dear Nan’s cooking from mini apple and blackberry pies with fruit fresh from the garden or Grandad’s allotment that she baked just for me, salads with orange slices and hard boiled eggs decorating the top, home boiled ham, stewed and jarred plums from Grandad’s orchard, the world’s best home pickled onions and not forgetting Nan’s Christmas pudding and stuffing for the turkey too which are firm family traditions.

So yes, there is food in my blood.

Due to my lack of energy, my profound fatigue and pain on doing too much (like making myself dinner) the practical process of feeding myself is planned and prepared in advance. My Mum is wonder woman, literally. She fed me daily when I was living back at my parents during my illness, catering to my ever varying array of dietary requirements and intolerances. Now I’m back in London and ‘fending for myself’ (if only) Mum is being even more wonderful by donating her precious time to coming down to stay this week with me and Mr B to cook up a storm and fill our freezer with enough Jess friendly meals and snacks to last me 4 weeks or so until her next visit. It’s not like I can live on ‘normal’ ready meals (nor would I want to for that matter, far too processed to be good for us) not least due to cost but also due to wheat, gluten, dairy, eggs, soya etc etc somehow getting into every and anything processed! At weekends when Mr B is around more, he dons an apron and (under careful supervision from me!) whips up a storm. We’re big fans of simple clean foods such as prawn stir fries, poached chicken or baked salmon, all of which Mr B is becoming quite the master of (or will do in the coming months now I’m back in London!)

A little too complicated for my low energy cooking. But doesn't it look gorgeous?! Photo by Jess B.

A little too complicated for my low energy cooking. But doesn’t it look gorgeous?! Photo by Jess B.

I mourn my loss of actually being able to cook but try to make the best of what I can do. On better energy ME/CFS days I will use my main activity slot in the afternoon to make an easy quick recipe. Okay so I can’t embark on making a 4 course gourmet dinner or a giant 4 layer chiffon sponge  cake, but I can do small 20 minute activity sessions in my kitchen. These are fun times for me both in the making and of course the subsequent eating! I make things such as my pineapple baked oatmeal recipe or a simple recipe like this from Oh She Glows for frozen chocolate banana bites or I’ll prepare a simple marinade for dinner. Anything that isn’t too labour intensive or time consuming.

Often I have a companion in the kitchen to do the ‘heavy lifting’, stirring you know, the really hard stuff…or I let machines do the work for me. I love my mini chopper and  grinder. No aching arms from long chopping sessions here!  If I can I’ll sit on one of our breakfast bar stools whilst cooking so as to lesson the impact on my achy legs. I never wash or even tidy up in the same ‘activity’ slot. I don’t even load the dishwasher at the same time. Yes it’s frustrating and hard for a ‘now now now’ person like me, but if these adjustments mean I can indulge my passion every so often then that’s good enough for me for now. It’s not about depriving myself of the activity I love it’s about making it work in an altered way so my body can cope with it.

Cooking is not the only thing I miss of course. There are more serious and also some trivial things that I greatly miss too. But that’s for another post.

What do you mourn the loss of? Have you had to give something up that you love due to ME/CFS? Has chronic illness changed the way you do something you love?

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