Daily Living with ME pt4

Way back in 1990 I began training to be a nurse. It was great, I loved it so much, but sadly like many other things in my life it was brought to an end by ill health. When we were assessing patients we used a model called Activities of Daily living devised by Roper Logan and Tierney.

This was brought to mind recently when my Mum asked for help with the assessment of my Dad’s abilities and needs with his Parkinson’s disease. It’s amazing what you remember after 26 years, yet can’t remember what you did yesterday!

It has set me thinking about my own daily activities and limitations and the effects they have on me and my family.

The model uses the sections;
Maintaining a safe environment
Eating and drinking
Washing and dressing
Controlling temperature
• Mobilisation
• Working and playing
• Expressing sexuality
• Sleeping
• Death and dying

Everyone who has ME/CFS has different needs and limitations, I can only portray my own.

I thought I could write a blog about each element so this one will be;

Eating and Drinking

I am slightly underweight and most medical people assume that it is because I don’t eat and that if I eat properly I will be fine!

I eat well and should be much heavier than I am.  I have several food intolerances; wheat (gluten), dairy, refined sugar, caffeine, fish, yeast.  This is a bit of a nightmare, but means what I do eat is fresh and healthy.  Gluten free and dairy free foods are very expensive and often full of sugar, but I have found some that I can tolerate.  I have yeast free, gluten free bread made from a mix, which someone has to make for me and it works out very expensive.  If I eat out it is impossible to avoid all the things I am intolerant to, so I always avoid wheat and fish as they make me really ill and I have to put up with the effects of what I do have, which means eating out is not the pleasure it should be, but I have learnt how to minimise the effects as much as possible. We don’t eat out much anyway as it is too demanding and stressful. My diet makes visiting other people rather awkward and many don’t understand the necessity of sticking to it.  I would not eat a gluten free diet by choice.

My stomach symptoms include pain, bloating, constipation, diarrhoea, indigestion, nausea and vomiting.  I have had IBS for about 33 years!  The pain can be excruciating.

I take anti spasmodics when symptoms are bad, but following the diet has helped a lot.  I can also tell quite quickly if I have accidentally had something I shouldn’t have.  Food shopping is hard work as wheat is in so may products that you wouldn’t think of. I have to take a fibre supplement and multi vitamins and omega oils supplement. I currently take additional iron supplements, but it is only till end of this course.  I had a 3 month course of Vit D supplements but these were stopped as my level got up to the minimum required, I suspect it will probably have dropped of again especially now it is darker and colder outside.

I recently had an endoscopy and colonoscopy to investigate why I had anaemia, a common cause is bleeding in the gut.  My tests only showed a hiatus hernia, which explains the chronic indigestion.  The indigestion is mostly controlled with  Omeprazole, but sometimes the dose is not enough and I need antacids too, it’s very much dependant on what I have eaten.

I am unable to cook a meal for myself or my family so my husband has to cook alongside his full time job.  I can usually get a light snack and hot drink.  I can’t chop ingredients or stir pans of food, but could put a jacket potato in oven for example.  We tried to get carers to cook meals sometimes, but it just didn’t work out and many care agencies are not allowed to make meals only warm a ready meal.  My PA sometimes prepares a meal for us to warm up later.

My daughter likes cooking, inspired by bake off, but I can only supervise her. At the moment she likes to do the Bake Off technical challenge where the judges get sent out of the kitchen, so that is easier for me as long as I supervise the oven parts. She has recently got interested in making gluten free things and more savoury things, before she would make things she knew I couldn’t have. Again I think Bake Off has helped with this.

I always enjoyed cooking and do miss being able to cook and provide my family with a meal.

Rob also has to do the food shopping.  I can manage an online shop every so often, but I get easily confused and it wears me out.  This means I don’t have a lot of say in what we eat and I can’t browse shelves for inspiration as you can in the shop.

Being low weight means I do have to eat regularly and even if I really don’t feel like it.

I have a kettle and tea bags upstairs so that I don’t have to go up and downstairs every time I want a drink. Decaf tea only, but there are some great non caffeine teas now. I don’t have milk or sugar so it’s very simple. I don’t really like cold drinks, except if very thirsty or hot, which is rare.

I see lots of lovely sounding recipes, but get down because I can’t make them or because the ingredients would just make things to expensive. It’s the downside of spending quite a lot of time browsing the internet when i am not able to do much else.

Because I can’t always eat the same as everyone else it can cause problems with family meals as Emily wants to have something different or she will refuse the gluten free version that we are all having.  Meal times can be very stressful and that doesn’t help my digestive issues.  We also find it difficult to plan meals in advance which makes getting a meal ready rush and stressful. Four out of seven nights Rob and or Emily are out just before or just after tea so it makes things very rushed.

If I have having a particularly bad day I find it difficult to swallow.

I get quite a lot of sores in my mouth and frequently bite inside my mouth. I have intermittent issues with wisdom teeth including site where one was removed 15 years ago!

I have sore throats much of the time and cough a lot after eating.  I have a constant sensation of something running down my throat, which saliva does, but most people are not aware of it.  I had this investigated and was told it was fine and may be due to sinus issues or just a heightened sensation.





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