Monthly Archives: September 2013

My friends and family have been brilliant at supporting me throughout my illness.  Of course a few people I thought were friends have disappeared, but I also know the ones that remain are true friends.

This post focuses on how they’ve helped me to feed myself and my family, but they have also offered a myriad of other support.

• My husband had to take responsibility for all the food shopping and cooking for a while.  Now he generally cooks all the meals at the weekend.
• My two eldest kids now cook once a week each.  They are now both competent at a range of meals.  There were some tricky times when they first started and didn’t really know what to do.  Sometimes I was well enough to sit in the kitchen and talk them through stuff, other times I would be unable to move from the sofa or my bed and there would be tears.  Now they are both competent at a range of meals. This is a really positive outcome from my illness.
• Every time my mum or mother-in-law came to visit (which was at least every school holiday to help with childcare) they would not only do the cooking whilst they were at our house, but they would also bring extra meals and put them in the freezer.  This became a bit more awkward after my daughter had to go gluten free, as my mum kept forgetting and bought meals like pasta bakes and sausage casseroles, but there were many times I was grateful for their efforts.
• My local friends set up a meal rota using www.takethemameal.com. Every Friday for over a year we had a meal delivered to our house. It is hard to describe how much this meant.  Firstly it was one less meal to plan, buy food for and cook, so it lightened my load. Perhaps more importantly I knew that I had all these people supporting me and wanting the best for me.  The emotional support I got from this was as great as the physical.
• Other friends who did not want to commit to a rota would turn up randomly with food such as home-made soup, casseroles, shepherds pies.  When they were making meals for their families they would make double and bring some to us.
• Cakes:  For the first few months we had a LOT of cakes.  I think this was another way of people to say they were thinking of me and reaching out, even though I couldn’t spend time with them.  The kids loved this, and it was a small compensation for the fact that their mum was ill. However, my daughter and I were being advised to follow a low sugar diet, so it’s probably good that these tailed off!

Everyone will have a different support network, but whatever you have make the most of it, and be grateful for it.  Don’t be afraid to let people know how much you are struggling.  If you put a brave face on things, people will assume everything is OK. The meal rota from my friends came from a conversation where I was asking for suggestions for easy meals.  I explained why I couldn’t cook nearly everything, and how I was trying to adapt and I think it helped them to realise how much I was struggling.

There’s no doubt about it, feeding a family is a huge task, just ask any mum. As a working mum, pre-illness, I had a pretty slick system of meal planning and on-line grocery shopping. We also had a weekly box of local organic vegetables and a milkman; we ate pretty well.

For the first month or two just after my crash my husband had to take charge of all the meals and shopping.  This drove us both crazy, as he chose convenience over healthy food, and I was aware that eating unhealthily would not help me recover.  He also hardly ever cooked vegetables to accompany meals.  We were still getting our veg box delivered and were throwing a lot of it away. I’ve always tried really hard to feed my family healthily and this really annoyed me. I therefore used some of my minuscule energy reserves to comment on the types of food he was choosing, which he did not appreciate.

As soon as I was vaguely able I wanted to take charge of planning our meals, even if I couldn’t cook them.  Partly so I had more control over what we were eating, and partly to lesson the strain my husband was under (remember he hadn’t just taken on the cooking, but all the other tasks involved in running a home).

I switched to Ocado for my shopping as a couple of friends had told me their app. was really easy to use.  They were right.  I found this much easier than the supermarket I used before I was ill.  I used their delivery pass system that automatically books the same delivery time each week and fills your trolley with an “instant shop” which you can then edit.  This meant that most of the items I buy regularly were already in the trolley and I just deleted the ones I didn’t need that week.

My brain fog and fatigue meant meal planning and grocery  shopping was a huge task and I had to split it up and spread it over 3 days and rest after each step.  Here are my steps

Day 1. Plan meals – I’ll write a separate post about this soon (it’s tough with brainfog).

Day 2. Go through the instant shop and add and delete items that we use regularly.

Day 3. Check what we need for each planned meal and ensure it’s included.

On each day I would do a little bit, then have to go and rest (generally lie down and listen to guided meditation), then later in the day I would do a bit more.

It sounds so simple, and yet it was sooo hard for such a long time, and although it’s easier now I still don’t do it all in one go.

There have been many, many times where I’ve forgotten a couple of crucial items.  Since I was too weak to just “pop” to the shop and also found it really hard to adapt my meal plan due to brain fog my husband has often had to dash to the supermarket on his way home.

I have also frequently not managed to check the cupboards to see if we already have something.  At one point we had 5 bottles of ketchup because I couldn’t remember whether we had any and did not have the energy to check.

If you have M.E./CFS you know how difficult it is to do every day tasks like cook a meal.  The two main difficulties I faced were:

• Fatigue – this stops everything.  You don’t have the energy to walk to the kitchen, to chop food up, to shop for food, to think about what to eat or to cook, to stand at the cooker, to stir a pot, or anything else you can think of.
• Brain fog. Cooking requires lots of mental processing.  You have to plan what to cook, what time each item needs to start cooking, follow recipes, think about what to eat for each meal, etc.  All of this was beyond me for a long time.

So, how did I overcome this and ensure that not only I, but the rest of my family was fed?

1.  I asked for and accepted help.  You can read about my support network here.  Everyone will have a different situation, but make the most of what you have.

2. On-line grocery shopping.  I’ve got a post about how I manage(d) this here.

3. Use pre-prepared food whereever possible.  My favourite healthy options are

• chilled soups – simply open carton, pour into bowl and microwave
• carrot battons – I think these are designed for cooking, but we use them to dip in hummous as a great snack
• stir fry packs vegetable packs
• Cooking sauces – There are some gluten free ones around.  Our family like Thai Green Curry and italian tomato and pepper.
• Diced meat – put in a slow cooker, with a jar of sauce and some pre-cut veg.
• Frozen veg that you just microwave or add to the slow cooker

4. Use my slow cooker and microwave for all cooking.  I once tried to cook some green beans on the stove, but completely forgot about them, dished up and ate the meal without them.  It was not until my husband came home and found the pan smoking on the hob that my error was discovered.  I came dangerously close to burning the house down with me and the kids in it, and I avoided using the hob after that incident.

5. I bought a microwave rice/pasta cooker.  This meant I could easily cook rice to accompany meals from the slow cooker (it does not successfully cook gluten free pasta, but may work for normal pasta).

I hope my experience is helpful in some way to you.  Please share your own tips in the comments below.

To read what life was like before the crash see this post.

At the end of November 2011 I went on a night out – an early Christmas do for the staff and committee members of my children’s after school club.  That was the last night I felt well.  I had a great time – a meal, too much wine and some dancing.

The following week I had a sore throat, swollen glands and felt unwell.    I would normally have phoned in sick for work in this condition, but I had an important meeting, so struggled on, although I drove rather than cycled to work. That weekend I completely lost my voice.  I had to communicate with my family by signs and writing.  By Monday I could quietly whisper to people, and instead of taking time off I continued working.   I managed this by resting at home in the evenings and weekends and relying on my husband to do lots of the household chores that I normally did.  I recognised that my family were taking an unfair burden of the illness, and perhaps I should rest in work time so I had some energy to spend on them, but I was really excited about the work I was doing, which culminated in a big report, due just before our planned pre-christmas break to Center Parcs.

Center Parcs was a holiday we had all been looking forward to and I was determined that my illness would not ruin it.  I went to the swimming complex every day with my family and had a great time.  I would have to stop the active stuff before them and I would go and lie in the Jacuzzi or get changed whilst my husband took them down the rapids yet again.  I managed to ice skate as well, but had to leave the ice before the rest of the family and sit and rest.  If I did too much my glands would swell up and my throat would get more sore.  I thought I was listening to my body by resting whenever I got these symptoms. My husband did all the cooking and general organising of the family whilst I rested and conserved my energy so that I could join in some of the activities.  Over all I came away from the holiday feeling better than at the start.  I continued to suffer from fatigue, and throughout the Christmas period I had to have daily rests/sleeps in bed.  I was also still getting the swollen glands and sore throat when I did too much.  I stayed away from alcohol , except one glass of wine with Christmas dinner, as I was determined to kick this virus.

We had planned a New Years Eve Party (I sent the invites out in Mid December thinking that I would definitely be better by then).  New Years Eve was the first day where I did not have to go to bed and rest,  I felt good  and we had a great night with our friends, I even had a few drinks.  I still had a niggling sore throat and my glands would still sometimes swell up, but that was getting less frequent.  I was 95% better.  It was the New Year, time to forget a whole month of illness and dive back into life.  I went back to work, and once again it was busy.  I decided to ease back into exercise, so rather than cycling to work I went to the gym before work and just did 20 minutes of very gentle exercise.  It felt good to be exercising again and I signed up for a spinning class the following week – I never made that class.

I survived the week OK, although I was still driving the kids to school and driving to work.  On Friday, my first day to myself since before Christmas I had a long list of errands and chores that needed doing.  I knew I was going to struggle to fit it all in, but worked out a plan and set off.  I was progressing well with my list and by half past one had two more locations to visit.  However, I felt I needed to recharge my batteries and so decided to go home have lunch and an hour of resting on the sofa before doing the final errands.  I could still do it all before picked the kids up.  That was it – my crash.  I never recovered my energy, I never did the last two errands.  I lay on the sofa all afternoon, dragging myself out to get the kids from school.  When my husband came home I said my virus is back please can you cook tea.

I felt truly awful and don’t remember much about that weekend.  On Monday I phoned in sick to work and went to the doctors.  I saw a locum who said it sounds like a virus, just rest, she did mention viral fatigue and told me if I didn’t feel better by the end of January to come back and they would do some blood tests.  I was staggered.  The end of January was 3 weeks away, there was no way I could continue feeling like this for three weeks, but guess what ……. At the end of January I saw a different locum who did lots of blood tests.

Memories of this time are vague, time drifted past in a haze of exhaustion.  I made sure I got out of bed every morning.  I struggled with the simplest of tasks.  Getting dressed exhausted me and I had to rest.  I stopped trying to have a shower, that was a luxury I did not have energy for.  I can remember trying to eat porridge for breakfast and the spoon feeling unbelievably heavy.  My husband took the kids to school and the day drifted past.  I could not read.  I would lie on the sofa with the TV on, unable to focus.  I would drag myself to school (in the car) to collect my kids, come home and go straight to bed.

When my blood tests came back as normal as I was given the diagnosis of post viral fatigue and told to rest as much as possible (not easy with 3 kids).

I plan to write more about how I began managing my condition, and what helped me, but right now I want to start writing about food.

Before I got ill I worked part time at a local college, in a job that was much bigger than the hours I worked.  Despite the challenges, I loved my job and was really motivated by what I was doing.  Just before I got ill I was producing a huge 5 year plan and was putting in extra work to make sure I got everything finished by the pre-Christmas deadline.

At home I was responsible for 3 school-age kids and all their various activities, all the cooking and food shopping as well as most of the cleaning and laundry.  My husband was/is supportive, but worked long hours; because I worked part-time I did the lions-share of the household chores.

I did not work on Fridays and I tried to carve out some time for myself, although there was a constant pull of household jobs that needed doing. I was also a committee member for the after school club my children attended and was busy organising a fundraising 10km run for them.

In addition to this I had an active social life.  I did a pub-quiz every week with a group of friends, and regularly socialised at the weekends.

I did sit down and watch TV in the evening, but my brain was always thinking “what do I need to do next, to make tomorrow flow smoothly?”  Like most households with two working parents and three kids the list of jobs to do was always longer than the time available.

I loved cycling and cycled to work most days. This, and my weekly pilates class, were the only time I found to exercise, so I took it seriously,  I had a heart rate monitor and sensors that monitored by speed, distance and cadence on the bike.  This makes me sound like a far better athlete than my performance suggests.  I was not interested in winning races, but I wanted to optimise the time I had so that I could enjoy a fit and active life.  In the past year I had cycled the London to Cambridge Bike ride (60 miles) and a 40km women’s cycletta.  I was focussed on improving my fitness and doing more events next year.

We were an active family and at weekends often went swimming or cycling together.  My youngest son also loves football and I would get dragged into back-garden football matches.  Our holidays were spent camping, and my husband and I loved walking, although this had been somewhat curtailed by the children.  We also went on an annual cycling weekend with friends, staying in a hostel and going on a 20 mile (long for children) cycle ride on the Saturday.