The Imitator

The Imitator

4246950-chameleonImitator – to have or assume the appearance of or simulate or resemble…

Fibromyalgia imitates…

Lupus; rashes, fatigue, joint pain, headaches, swollen glands…but it’s not!

Multiple Sclerosis (MS); fatigue, pain, numbness, tingling, muscles spasms, weakness, bladder problems, bowel problems, depression and anxiety…but its not!

Rheumatoid Arthritis; swollen joints, pain, stiffness…but it’s not!

Myalgic Encephalomyelitis (ME) aka Chronic Fatigue Syndrome (CFS); anything from slight reduction in daily mobility to complete immobility and inability to carry out any daily task no matter how simple…but it’s not that either!

Irritable Bowel Syndrome (IBS); abdominal pain, cramping, constipation, diarrhoea, incontinence, lethargy, nauseous, vomiting, back pain…but it’s not that either…

…but yet it is all of these things, but none of them depending on what it feels like being, it is indeed the Great Imitator…a chameleon.

Advertisements
Baby Food???

Baby Food???

innocentMy stomach has been so bad lately that i have actually prayed for relief, and the answer i have received is eat baby food! What God is actually saying to me is this – feed yourself as you would a baby, with clean and simple foods, which will allow your stomach to rest and heal.

When you have to take daily medication your stomach pays for it, even when the Doctor gives you medication that is supposed and does to some extent protect your stomach, there always seems to be a gap. This gap, results in an inflamed stomach, stomach acid and stomach reflux and a continual feeling of nausea. This in turn seems to allow even the foods i normally eat to leave their mark.

But, when you cannot stand and cook eating what is good for your stomach is not always easy. I have already come to the conclusion that it is not the normal suspects that are causing the problem; wheat or dairy, but more often the combination of sugar and fat and/or red meat and often all those unpronounceable extra added ingredients, which are not needed.

Changes are hard to deal with and come slowly, but one at a time and i am praying that i won’t actually have to eat baby food!

So far, i have solved breakfast: porridge oats, whole milk, honey, fruit smoothie (Innocent) and fruit malt loaf.

Life could be worse – i once knew a guy who was allergic to water!

What a horrible week…

What a horrible week…

exhausted_revision_v02_01This is the shortened history of my week –

Sunday – church stake conference, which was really good. A friend brought me and a few other friends back by car and it was an all round good day.

Sunday evening – migraine

Monday – fibrograine (aka migraine + fibromyalgia = hell)

Tuesday – residual fibrograine, but i needed to get up and go to the food shop, i travelled both ways by taxi and when i got home i had a shower, ate some food and had a nap. On waking from my nap i realised that whatever i had eaten had caused a auto-immune response or in other words an allergic reaction, which felt not unlike a fibrograine + IBS = hell++

Wednesday – still very unwell. Stayed curled up in bed and ate very little and when i did i felt sick. Slept on and off through the day and then through the night too.

Thursday – the symptoms had begun to subside, but the fibromyalgia and chronic fatigue were heightened +++ However, i made myself get up and attend my regular book group as it is only once a month and although it was hard work to get ready it was good to attend and feel slightly human.

Friday – i woke up feeling absolutely fine. I went out, did a little Christmas shopping and bought some food. Then, in the evening as i was straightening my bedding and messing with the cat, George, hell returned.

As i walked around the end of the bed I let my eyes drift to where the cat was on my bed, rather than looking at where i was going, this caused me to loose my balance and the next thing i know is that i am laying on my side on the floor. I had banged the back of my head on the closing door, which slammed shut as i hit it, my right shoulder, my right hip and ankle hurt and my hands felt like they had been stamped on. I didn’t know whether to cry or not to cry, but i was in pain. I laid still for several minutes before i was brave enough to try and move anything. As i moved one limb after another i was thankful to realise that nothing seemed to be broken. However, getting up from the floor was another obstacle all together and took some time to maneuver, but eventually i was laid on my bed, in pain. As i was being pulled into sleep, not a good idea, i managed to text my daughter to let her know i had fallen, there wasn’t anything she could have done and i soon fell asleep.

Saturday – i felt like i had been squashed by a giant bear, very tightly. Everything hurt, but especially the back of my head and my hip, but the FM pain thought it would join in the fun and run up and down my body playing tag. I ate a small amount of breakfast, but halfway through i was sick, which along with the headache and dizziness whilst standing led me to believe i probably had concussion. I did speak to a couple of my daughters over the phone, but mainly i slept or curled up in bed and held on until everything settled.

Sunday – i went to church because a friend came to collect me, and it was good to be among people, but on my return home i went back to bed and more sleep.

Today – i am feeling exhaustively tired – all i can do is wait for the good day to come around once again.

6 Stages of Fibromyalgia

6 Stages of Fibromyalgia

dante-hell

Stage 1

You started experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired. You can hold a job, you can make it through your day, but you know something isn’t right… so it’s something you’re going to start researching.

Stage 2

You are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. you feel a lot of pain and you are exhausted almost every day, but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones, and have some good time here and there.

Stage 3

You are in constant pain, you are constantly tired, you wonder whether you will be ever able to function normally again. You are considering not working, because you no longer have the energy you once had, you come home from work and all you can do is rest. You have to turn down invitations, you have no energy left and you have to rest up just to go back tomorrow. In this stage you start to feel more alone, and more and more people are beginning to think you whine too much. This stage can last a long time, perhaps years.

…you can read the rest here.

But i would like to add an 7th stage

Stage 7

It is called the ‘I Quit’ stage because you have tried every treatment there is, seen every doctor and specialist you can and everyone around you thinks you are faking it and you can’t really prove otherwise and so the only thing left to do is Quit.

Quit living up to other people’s expectations. Quit pretending you can cope. Quit trying to explain it all to others, as there is nothing to show them anyway. Quit taking the ‘shit’ load of medications that don’t help anyway and get rid of most of them. Quit denying that you are broken. Quit expecting people to understand or to help you – it’s not that people won’t or don’t, but you quit expecting anything from others. You begin looking after yourself, what you need and you get rid of what you don’t need, one layer at a time. Then you begin to find JOY in being who you are, it’s not an easy life, but it is your life.

Allergy? Sensitivity? or ??

Allergy? Sensitivity? or ??

vegetarian_dietsIt seems to have become trendy to have an allergy or sensitivity to some food item or other, but the main culprits are wheat, gluten, lactose, dairy, eggs, peanuts, other nuts, soy, fish and shellfish. That is quite a lot of things we could be either allergic to or have a sensitivity too. Not to put one food above another in severity and not to belittle anyone who truly suffers from a food allergy, but they seem to be a crazy need to be gluten or wheat intolerant above anything else. Gluten in found in wheat, barley and rye and any food containing any of the former ingredients.
But what if I state that most people who are gluten intolerant are not, but it is something else, most people would chase me away with a pitch fork? More about the something else in a moment, but I need to go backwards to come forwards first – a word about Coeliac disease.
Coeliac Disease is NOT a food intolerance against gluten or wheat, in fact it is not a food allergy or sensitivity at all. What it is, and I didn’t know this until I looked it up, it is an autoimmune response to a protein found in gluten, but not the gluten itself. Coeliac disease antibodies can be found in the blood and a simple blood test can confirm the diagnosis. It is known to destroy the lining of the human gut and in doing so can prevent the absorption of nutrients often causing severe weight lost and sometimes malnutrition. The only treatment is to stick to a strict gluten free diet.
However, gluten intolerance cannot be tested for in the same way and does not cause any lasting problems in the gut or the body. My theory is that most people are not intolerant to gluten, but to soya.
Symptoms of gluten intolerance
• Nausea and vomiting
• Diarrhoea
• Irritation of the mouth and throat
• Hives or rash
• Nasal congestion
• Eye irritation
• Breathing difficulty
Symptoms of soya intolerance
• Abdominal pain
• Diarrhoea
• Runny nose
• Wheezing and trouble breathing
• Fever
• Eye irritation
• Hives and rash
• Itching and swelling
• Anaphylactic shock (in rare, severe cases)
This is a normal protection body response when under attack from a food substance it cannot tolerate, which is to get whatever is seen a threat out of the body as quickly as possible, which is not unlike food poisoning.

BUT 

If you think you have developed Coeliac disease, which you can do at any age, you should seek medical help and diagnosis as soon as possible. Then follow prescribed treatments as directed.
If, however, you develop symptoms after eating a food that contain wheat, barley or rye then before you give up on these foods, scan the ingredient list and see if it contains soya in any form and find a similar product, i.e bread that doesn’t contain soya before you ban it from your diet. You may have to buy from a small bakery, but ask what the ingredients are all the same. Removing a certain food from your diet should NOT be undertaken lightly as it could leave you short of certain nutrients.

NOTE
If you are unwell do not diagnose and treat yourself. One of my daughter’s sought advice from her General Practitioner about a food intolerance and this is what she was advised to do; don’t eat, in her case it was dairy, for 6 weeks and see if the symptoms clear up and then try them again and see what happens. If you have the same symptoms as before you stopped them, then the chances are you have an intolerance and should be careful what you eat.
Cutting soya out of your diet is very difficult as it is now used in all mass-produced bread and bread product, cakes, biscuits and even chocolate, but eating less, less often may stop your body from over reacting. Remember that whatever you are allergic or sensitivity too is seen by the body as a poison and it will expel it, quickly.

bread
http://www.eatingwell.com/recipes/honey_oat_quick_bread.html
Listology – Care

Listology – Care

20150220_162053We all like to think we are indestructible, and even more so when we have a chronic condition and yet what we need first to to give ourselves deep Care.

  1. ‘When you cannot do what you have always done, then always do what matters most.’ – Robert D Hales
  2. Take your time
  3. Accept yourself as you are and not as you were or as you would like to be
  4. Buy fresh cut flowers and see them as a blessing
  5. Go to bed at the same time every night
  6.  Eat well, and simply every day
What to do when you are Time Rich, but Energy Poor

What to do when you are Time Rich, but Energy Poor

exhausted_revision_v02_01aka (all-s0-known-as) What other people think you should do when you tell them you are Time Rich, but Energy Poor and you are Bored!!!!

I have in the past made comments to a friend of mine and to a daughter or two that i am having a bad day and i am soooo tired, but i am bored. Do they recommend some delight for me to fill my time? Not usually any that are useful and sleeping all day will often result in me not sleeping all night, although i am partial to naps during the day, sleeping all day is not good, unless i have migraine.

These are the things that have been suggested –

  • take a nap (done that)
  • have a shower…yes, but are you going to come and dry and dress me and put me back to bed afterwards?
  • go to the local library…blank stare
  • go to your favourite coffee shop…even bigger blank stare
  • visit the art gallery…bog-eyed blank stare
  • go for a walk…(this one is my favourite) this is what i would like to say back, but never do ‘are you coming to dress me, then when i get back undress me and put me back to bed?’an unfathomable stare…I mean, i don’t mind walking down the garden in my pyjamas, but i am not about to walk down the street in them, even if it appears to be trendy at the moment to do so. No. Just NO!

I am not a normal person…please stop seeing me as a normal person…i am sorry i have a invisible, chronic condition, but it just the way it is, be grateful it’s not catching!

So what to do when you are TIME RICH, But Energy poor…

  1. sleep
  2. eat – today i managed cereal, orange juice, fruit bread, boiled eggs, toast (which i had to make twice as i managed to burn the first lot black because even though i was stood next to it, i forgot about it, I don’t mind dark brown toast, but there is a limit) and a microwaveable chocolate pudding.
  3. stay hydrated
  4. have a bath/shower if you can and invest in a extra large snuggly towel so you can air dry while staying warm and who needs clothes anyway!
  5. laptops or iPad are an amazing invention, but small amount often works best
  6. read – i find a kindle easier than a book as i can stand it up and read it rather than having to hold it in my hands
  7. watch a film or a favourite TV program
  8. do some light crafting, knitting, sewing, etc. even a small amount moves time along
  9. adult colouring books – do i need to say more
  10. more sleep
  11. stop telling yourself that if you can make yourself ‘do’ when you know that you really cannot ‘do’ then…????
  12. meditate or relaxation – forget about sitting double-crossed legged and all that
  13. eat chocolate, buy your absolute favourite and save it for such an occasion.
  14. remember this too will pass

And when it has passed and you tell a daughter or two or a friend that you had a bad day, they often ask me why you didn’t tell me? Well, this is the reason – ‘it is just too tiring to talk.’