It seems ages and is ages since I have updated my blog. No excuses but life.
I am not sure if the extra hot weather is having an effect or if I am going through yet another bad patch. Supposedly I have a 2 hour window each day where I can do something although not too much, but only on a good day.
It is frustrating but I am improving my discipline on only booking a couple of things a week – maybe going out to a pub or long telephone conversations, taking the mobility scooter to the river for a short walk with the dogs or a trip to the supermarket.
Any bigger events need more planning with rest(s) before, during and after. I have also noticed that whatever I decide to do, it normally is putting me into negative ME. Maddening – well yes just a bit. I could frequently scream in frustration. I posted on Facebook today that if there is a heaven then I hope it is free of ME. I always want to maintain hope for one day.
The 2 hours of gardening with breaks last weekend was not a good idea translating into 2.5 days of total bed rest and then another event unexpectedly yesterday hit me this morning despite resting. Although in bed sleeping most of the day I still feel exhausted and cannot sit up properly as my muscles are just too week.
Although I am totally bored of ME (let alone anyone else) with the fluctuations which can be over a day or even hours I am not easily able to totally forget about it. It is there as a constant companion, annoying the majority of time with only the occasional brief respite. When I deal with any crisis or undertake an activity that I have to do, adrenaline does kick in and I can – on some occasions – put the ME onto a “back burner” but once I am through the event (which must not be too long) then wham the ME certainly lets me know how much I have done and how much it affected me.
As I sit and type I am extremely tired, not able to sit up properly. I am tired but wired i.e. in this instance I cannot sleep but would love to. I am hopeful that this flare up will diminish by tomorrow with a gentle evening and early night. It is horrible as my lungs feel heavy and congested, numbness and tingling over most of my body (not unpleasant just weird), dizzy, bit breathless, headachy and incredibly weak.
Now I have my food sorted out I think it is time to look at supplements. I have been doing an ongoing analysis of potential deficiencies within ME in general and identifying what other people living with ME have taken and their results. I will double check what tests I can get via my doctor but then look at getting private tests via recommendations of others.
Money is always a factor with getting testing and prioritising what is worth taking. Obviously identifying if there is a deficiency is worthwhile before paying for a variety of supplements. I worked out that it would cost be about £200.00 per month if I were to take most, but not all, the supplements recommended across various ME websites!
I have been via food taking what I can naturally to boost potential deficiencies. What is interesting is that being so sedentary means that my food intake does not need to be much at all. Luckily I have shifted a little bit of weight which I had put on since having ME. I used to give in to whatever food I felt like eating – within reason – but also had identified that really I was eating an incredible large amount to what my body actually needed. In the past I would exercise not only for fitness but to use up calories. However, I think so many of us just eat too much and actually we do not need a huge amount of food each day. Obviously if someone is active maybe doing physical work or sport, then they need to fuel their body accordingly.
What I have done is to really home in on how little (rather than how much) I actually need to eat and massively cutting down portion size. As I need to cover a range of ideal foods giving me the nutrition my body needs, this might mean I divide up over the day the fish, meat, veggies, fruit, nuts etc. into meals whereas before I would just eat a much larger amount of various foods in one sitting. Today has meant a small amount of fresh fruit – from frozen, where I divide food into small portions – for breakfast, lamb and beetroot for lunch and there will be green veggies for an early supper.
I keep an eye on my overview sheet to ensure I work through the list of foods over a week. I also try not to obsess over this i.e. if I crave a bit more fruit one week – knowing the urge may shift onto greens. It seems to balance out over a week or so.
What I also am doing is to buy quality produce so the meat is grass fed and good quality veggies that I need to fuel my body. Happily the nutritionally dense foods are also scrummy!!!
Although there is plenty of good news there are no miracles as yet! The nutrient dense foods are 90% Paleo eating with my 10% allowance for deviation. Admittedly having just made my first batch of ice cream I have been having the odd small spoonful with the hot weather we are experiencing but all in the aid of cooling down.
I am extremely happy with the nutritionally eating that I am following. It is not difficult, but does take thought and planning. Happily a friend also reminded me about utilising hard boiled eggs as emergency snacks. Having something instantly available can be helpful for the bad days when I can really not move much at all, or when I just keep sleeping.
My fondness for guacamole has increased and is another easy snack to put together. I wish that I could report that the ME has improved with the eating regime. Although it has not improved I do feel better (I think) and also know that I am looking after my body. It is also important for planning to take into account the 2-3 bad days that I can have – more or less of – over a week. The freezer has been invaluable and a resource I have really utilised – freezing small portions of soup, freezing individual portions of meat, fish, veggies and fruit. It works for me.
I also firmly believe that even if a body does not display ill health it is critical to still fuel it with nutrients that it needs. I think we have become a little complacent with our health. Every day people consume food that may seem healthy or is easily cooked, convenient or is part of the modern foods that we have been told or believe are ok, but recent news has certainly put a twist on food. News now reports that low fat is bad, sugar is bad and that fat is bad.
However, I have given up on media advice and prefer to go back to basics – of nothing processed, seasonal and local plus nutritionally dense foods. I also am against that a little of everything or in moderation is fine – my body has specific needs and I need to address this. Sugar is not fine, nor are processed foods. Also we all have different ideas of what moderation is … whether fish and chips take away, microwave ping meal, shop bought pie and pre-prepared veggies, sandwich at lunch time etc. etc.
Whether from home made bone broth, veggies from the garden and meat from the local butcher I firmly feel we need to go back to our past when food was from scratch. This does not have to be difficult or time consuming. Yes it takes some thought and I utilise batch cooking and the freezer.
However, I am Miss Goody today so just ignore me with my ranting’s.
I feel sad and more cut off from other people and the world in general as time goes on. I cannot believe how much healthy people do within their day. After over 8 years heading into my 9th year of ME – I have started to forget just what real energy and a normal body feels like. I probably also plan a great deal less as I know I just cannot do it and I do have fear of doing stuff. I feel this is particularly hard on Chris who still has lots of energy and is of course normal. I feel I must encourage him more to do things without me so at least one of us is living life to the full. I am living my particular life to the full – but it is just a great deal less than others.
One part of the fear is that ME can be progressive with obviously a terminal result. That fear gives me a reality check if I start to worry about the smaller things in life, but also reminds me that I do not want to relapse onto a lower level of ability. There are too many reports of people with ME going permanently downhill after overdoing it.
There is a school of thought that a person can go through the pain and symptoms just ignoring them. I wish it were that easy, but it is not. If I ignore the warning symptoms I just get sicker more quickly and that can be in minutes, hours or more rarely over days. ME demands a huge amount of respect in listening to what it is saying.
My current flare up is the result of 2 hours gardening last weekend. I was careful and divided up the 2 hours with rest breaks. I also was only weeding using a low stool so I could be sitting which does help. But I think I should have only done 30 minutes total and so have payback time.
It did feel good however to achieve what I did with the relatively small flower bed free of weeds and looking good. But it is difficult to know if it is worth the price. I have had to postpone seeing a friend today. I had other plans for this week which have been shelved – a little frustrating to say the least.
The best bit of this week is when I have been able to sleep properly and the odd bit of chocolate Baileys, banana and rum home-made ice cream. Sleep brings reprieve and is a healing time, but not this week recharging visibly although I think it must be underneath it all. I have used up my ability to sleep yesterday, frustrating as I need it but there has been too much pain. This then translated into horrendous nausea and pain over my body including noise sensitivity where any noise was agony.
To help the mind aspect I am continuing to practice mindfulness meditation which brings a lovely sense of calmness plus helps me to relax. But I can only do this when I feel reasonably ok, but I do feel that to keep practicing does help occasionally to switch off and to remain calm. It does also help with the acceptance side and living in the moment.
An ongoing and positive aspect is enjoying our home and garden. Every day I continue to feel lucky in where we live, our gorgeous home and appreciation of the garden especially during the warmer summer months and good weather we are having.
Life could be worse.