Archive for November, 2009

h1

Numb

November 30, 2009

This morning I saw my GP. She agreed that ‘the tunnel is longer than we expected it to be..’ Great. She wants me to contact LST and see what my options are. She suggested if it would be possible for me to do some things this year and some next, rather than just deferring for another year and risking being in the same position this time next year.

I had emailed a few folks over the weekend to say that I’m not sure I’m well enough to return in February. Babs wasn’t surprised. Conrad said it’s not ideal, but whatever we need to do to get you through… Linda at MEsh had questionned it a couple of weeks ago. The NT on Friday thinks I should defer another year. My Chiro isn’t surprised.

Elizabeth Albery: I kinda feel like everyone else had figured before me that I might not go back to LST this year and I so want to prove them wrong, but I also know that’d be STUPID.
David Marriott: You’re beautifully stubborn, but now is not the time to test it, I agree.

‘Beautifully stubborn’ love it!

I’m left feeling so numb. If I don’t graduate in 2010, it feels like an eternity of being at home, ill.

Advertisements
h1

November 29, 2009

‘I’m tired of words,
of empty promises,
of hopes deferred…’

These first three lines of an Advent reading by Henry John (b. 1938) struck a chord this evening. I’m way too exhausted to put up the whole thing, but if demand is sufficient, I shall.

h1

Current Perspectives in ME

November 28, 2009

Dad and I went to a conference today ‘Current Perspectives on CFS/ME’ a talk by Professor Anthony Pinching, Associate Dean of the Cornwall Peninsula College of Medicine and Dentistry & principle medical adviser to Action for ME.

One of the main things I took away from the talk was that no matter what I call my condition; CFS/ME, Bob, Sheila etc… I need to have respect for it. Have a relationship with it; ‘okay, that was too much, how about this?’ etc. [I’m in debate as to what to name my M.E. so, suggestions welcome!]

He gave an overview of ME, various hypothesies and explaining how there still hasn’t been enough research to fully understand this condition. The XMRV virus that was found in the US with patients with ME hasn’t had enough research done, so essentially the media just built our hopes up over that. But I remember doubting anything would happen at the time.

He said how there is a possibility that there may be genetic factors that may make an individual more prone to CFS/ME following a virus, trauma etc.

He also mentioned something about Rheumatoid Arthritis and CFS/ME which Dad had when he was my age or so…

On the way home, Dad and I talked about my ME like we’ve never have done before. It was amazing. I think the talk really helped Dad understand what it is I’m dealing with and that it is real.
He thinks my ME started when I was 10, after a serious Gymnastics accident involving a concrete floor, my lip and the death of my two (adult) front teeth.
He also thinks he is to blame for the predisposing likelihood of getting ME as he now thinks he’s been battling with this illness since his rheumatoid arthritis episode.
I was honest with him about how I find things hard emotionally, like being in a crowd, lots of people, unfamiliar places etc. Like tomorrow, I really want to go to church as it’s Advent, I want to go to the Minster in the evening, but I know I wont cope on my own, or if we’re in the middle of the Nave. In an ideal world, I’d like to be there and hang out with the Vergers… so I’m in control; I know what’s happening. Dad said ‘you become more like me everyday, I don’t like these kind of things unless I’m playing a leadership type role.

The biggie was when I said that over the last couple of days I’ve been beginning to think I’m not going to be well enough to return to LST as planned. That was SO hard to say, to admit to Dad. But it wasn’t met with anger or frustration, rather ‘I’d been thinking that for the past couple of months.’ Wow. and Ouch. all in one.

So I feel so relived that things are out in the open with Dad and I can talk to him without worrying; he’ll understand. Yet at the same time, he’s feeling really down and guilty about the whole thing too.

I’ve just been on the phone to Ed for 45 minutes. It was good to catch up, but there were a lot of silences. They ones where no one knows what to say anymore. Words can’t help. And yet they can.

It hurts so much.

h1

Nutritional Therapy

November 27, 2009

I went to the Nutritional Therapist for the first time today… here’s the outcomes:

Adrenal Fatigue is the major issue.
The adrenal glands produce cortisol and DHEA. Symptoms include: Fatigue, mental fogginess, anxiety and depression, low BP, Infections, Allergies/food intolerance’s, Insomnia and unrefreshing sleep, Increased PMS, Blood sugar imbalances.
In people with M.E. they have found that cortisol levels are incredibly low in the morning, yet by the evening, are very high. This explains why I find it so hard to get up and function in the mornings and why into the evening/night I’m at my best (despite pain levels).

  • She explained that my blood sugar levels are imbalanced, hence I have such highs and lows. She suggested I cut out any sugary food and drinks.
  • Eat mainly protein and plenty of vegetables.
  • Eat plenty of fish, nuts and seeds for essential fatty acids.
  • Don’t eat fruit until after lunch.
  • Keep carbohydrates low and rye, rice are better than wheat.
  • Green vegetable juices help to alkalise the body.
  • Avoid alcohol, caffeine, sugar, food additives and preservatives.
  • She recommended I take a variety of supplements, which I have ordered this evening (1 month = approx. £75 Eek). Including; Bio-Acidophilus (friendly bacteria, which also help having taken so many courses of anti-biotics this year!), Magnesium Citrate, Adrenogen (which is apparently Cow’s adrenal glands in tablet form; nice), mega strong Vitamin C, strong Multi-Vitamin including B6 and B12 as well as Fish Oils EPA. Most of which look like Horse pills!

Following a test (drinking baking powder dissolved in water; yuck) We discovered that I have Hypochlorhydria, or in English, Low stomach acid. This leads to deficiencies of vitamin B12 (which can cause weakness, fatigue and nervous system problems), several minerals (iron, calcium, magnesium, zinc and copper), most B-complex vitamins and vitamin C.

She explained how food intolerance’s can develop. Due to my stomach not being able to digest food properly, due to fatigue when eating, thus not chewing thoroughly and low stomach acid, larger particles of food are absorbed between the cells of the micro-villi in the stomach lining. They larger particles of food enter the blood stream, and rather than being energy, the body responds to them as a virus, or other foreign body and creates anti-bodies to the food particle. Thus my body is fighting itself.
We looked at a couple of food intolerance tests that I could try, but they too are expensive. I think Dad would prefer not to spend more money right now.

Diet recommendations;

  • Remove Dairy products from diet. Try Rice or Soya milk, Dark Chocolate (Green & Blacks), coconut milk/cream.
  • Eat more vegetables; 5 – 7 portions a day!
  • Eat slowly, relax and chew well.
  • Remove all sugary foods from diet, including most breakfast cereals, bread. Try Wholemeal toast and eggs or Rye bread and peanut butter or tahini for breakfast.
  • Try to have protein with every meal.
  • No fruit until after lunch.
  • Cut out caffeine. Drink herbal teas.
  • Nuts/seeds/vegetable snacks.
  • Wholegrain pasta and Brown rice
  • Epsom salt baths at least twice a week.

So I’m about to begin on this journey experimenting with food. I’m hoping it helps my illness go away, yet at the same time I can’t build my hopes up too much, either. However I have been warned it is a slow process – it’s not an overnight cure.

h1

Bucking the system

November 26, 2009

I was always brought up with the understanding that the Grey area is generally the norm. Yes, there is Black and White… but a heck of a lot of Grey, too. Rules are there to be broken. Not in a malicious way, but more ‘the spirit than the letter’ is to be adhered to. So if that means breaking the mould for whatever reason, so be it.

Except it’s not helping now; I almost need someone [not my parents] to be really strict with me about timetabling and pacing. But at the same time loving, for times when I really can’t do stuff.

You see I’m going to the ME clinic at Nottingham City Hospital. In all fairness, I’m not sure I’m well enough to get the most out of it, right now at least. But because I’m not listening, cause I’m so exhausted, my mind wanders [like wondering how I’m going to get off the very muddy field where I’d parked after seeing a car pretty stuck!] But there’s also part of me that isn’t being completely honest with her; last time I saw her was the day I drove down to visit LST. I didn’t tell Jane I was going that day, or that I was driving. Or tell her exactly what was planned.

Today we talked about the week at LST and how rubbish it was generally. We talked about what I could have done differently. But I’d already cut loads of stuff out in the name of pacing. Meh.

We talked about batteries. Things that recharge it and things that deplete it. My lists are quite uneven:

Recharging:

  • Cello
  • Listening to music
  • Talking/socialising with specific people
  • Visiting neighbors when I’m home alone
  • Fresh air
  • Sleep
  • DVD’s

Depleting;

  • Cello
  • Listening to music
  • Socialising/talking with different specific people
  • Isolation/lonliness
  • Traveling
  • Emotional stuff
  • Physical exertion
  • Reading
  • College work
  • Stress
  • Home
  • Stairs
  • Sleep paralysis
  • Nightmares

And as you can see somethings are on both lists, which really doesn’t help. How am I meant to plan around this when it’s different on any given day?

We talked about Quality Rest. I find it difficult to rest and not fall asleep, so often I count watching DVD’s as rest. However, although my body is physically resting, my ears and eyes are receiving information and my brain is processing and following a plot. So it’s not proper rest, apparently. Rubbish. Listening to music, as I have already established can aid rest and it also has the ability to trigger emotion and anxiety. Rubbish.
Jane suggested meditating in God’s presence, which if we’re honest, I’m rubbish at too. And a relaxation CD, and we tried out a short exercise this morning. It was helpful, but I drifted off to my own little world so many times, I’m sure I missed what she was saying! She was going to give me a CD, but I’d got halfway home before I realised I’d not picked one up. Rubbish.

We discussed de-conditioning that results from too much rest. Now that is scary. Especially as I know how stiff my joints get. How much stamina I don’t have. How weak my muscles are. My reduced mental ability. How low my mood is.

She has however picked up that panic/anxiety and depression are a big issue for me and has referred me to see the CBT people. Harah. This is what I’ve been needing/wanting since I came home.

I have a Cello lesson later today. I didn’t tell Jane this. I nearly canceled it, considering how physically painful this morning was, just getting up. Yet, I’m hoping Sarah and Cello-ing can lift me a little again, mentally at least?

You see, the more I think someone would tell me not to do something, the more likely I am to do it, within reason.

h1

Today turned out to be amazing

November 25, 2009

When you’ve not physically been able to brush your hair for 2 or 3 weeks, the thought of attempting to do it myself wasn’t even going to happen, especially with hair as frizzy as mine!
Mum brushed my hair this afternoon. When she’d finished, it was amazing. I was dissapointed, though, with the physical touch thing. Having someone play with my hair is something that really helps me, because of the physical connection. But ever since I remember, whenever Mum has brushed my hair, because she’s frightened she’ll hurt me, she backs off; but slow pulling is more painful than swift pulling; gets it over and done with! I can’t complain, she’s doing her best, but still… I was left feeling quite drained after 45 minutes of hair brushing;, yes, it was that bad!
After a bath and hair was this afternoon, I was actually feeling vaguely human! Harah!

A friend named Dave is coming to visit next Saturday for the day; actually made my day. He said to me: “my waking thought this morning ‘you’re free next weekend, go see Lizzie.’ Most Odd.” I like that thought 🙂

I mentioned this to Dad when he got home from work, his response was: ‘Why?!’ To which I said: ‘Why not?’ Dad said: ‘I know all the reasons why he wouldn’t, so why is he?’ [My father is so complementary of his daughter, not.] So I said ‘when Dave passed through Newark station going to Edinburgh from London and back, he liked the look of the station and wanted to see it in more detail and thought I’d be a good tour guide.’ It was funny at the time.
Turned out later in the evening that he was confused which David we were talking about. He thought we were talking about my Uncle Dave (Mum’s brother) who lives in Chester!

Mum has got flustered already, which is quite funny. She wants to know exactly when he’s coming so she can prepare meals and Matthew’s bedroom if Dave comes up Friday evening. But bearing in mind she’ll be at work 8 – 4 both days, she’s not going to see an awful lot of him anyway! I’m sure we’ll cope even if the floors aren’t hoovered etc. but she doesn’t seem to think so! Bless her.

I have something to hold on to, something to look forward to: Mr Marriott coming to visit. Yay!

I found out this afternoon a dear friend of mine has become a Christian. Awesome.
After messaging her on Facebook, I said if she had any questions, I’d do my best to help. Her response really put a smile on my face; She’d been asking questions at church and getting the sense they thought she was a little overenthusiastic, but she has read a lot of CS Lewis, Stott’s Cross of Christ and is now reading Tozer and Augustine. Which made me think that’s possibly more than the average Bible college student? Or is that just me? I mean, I have so many books I want to read… but we only seem to have time to scan read things… And we complain about time, but she’s a medic and reading this stuff alongside!
Anyway, I know you might be reading this, so the main point I’m trying to say is that it’s fantastic you’ve come to a relationship with our Lord and Saviour. Hazah! I pray that your enthusiasm continues and re-ignites others’ flames 🙂

Happy, Smiley Lizzie.

As part of my present to my brother for Christmas, I bought tickets for him to see ‘Hitler; My part in his downfall’ Spike Milligan theater show in Nottingham. We all went as a family this evening.

Mum, Dad and I wound up on the same bus as both the Guide units from the village going into Nottingham heading to the outdoor Ice rink in the Old Market Square. That was interesting, as there were more Guides than seats on the bus! Good luck taking Thursday Brownies at the same time tomorrow evening!

The Milligan show was funny. I was very impressed with their musicianship and general adaptivity! Using a Double-Bass case as a gun was one of the best moments. And Spike playing the last post on his trumpet, whilst laying on the ground; it’s not an easy thing to play stood upright!

During the second half, they wanted a volunteer to demonstrate the reading of minds. As Spike came down the steps into the Stalls to find his willing volunteer, we had a split second of piercing eye-contact, at which point I looked in another way. It wasn’t until I heard Dad chuckling the other side of Matthew that I realised Spike wanted me to be his ‘volunteer’…! Mum said she thought he’d ‘chosen’ me before he’d left the stage. I honestly don’t know, I was too busy giggling as Spike asked my name, guided me down the isle and onto the stage. At which point they wanted to demonstrate ‘mind-reading’ skills. I was handed a playing card over the top of a curtain which I had to stand on tip-toe to reach! I was then asked to tell the man behind the curtain what the card was, to which I replied ‘Doesn’t that defeat the object?!’ The voice from behind the curtain said: ‘Don’t tell me what to do, I’m the one who makes the rules!’ Mum, Dad and Matthew are sitting in the stalls laughing at me; thanks! So, I told him what was on the card; a ‘7 of Clubs.’ I handed the card, on tip-toe, back to the hand over the top of the curtain, the voice bellows: ‘My goodness, she’s right!’ [Hindsight tells me, maybe I should have held the car to the audience while saying ‘Queen of Diamonds’ or something similar, just because!] Was that it?! Despite the actors being very encouraging on stage, I was left feeling quite embarrassed as I found my seat again, Mum, Dad and Matthew still laughing at me.
Towards the end of the show, Spike sang a love song and put my name in it while pointing towards me. Hilarious!

Obviously, on the way home I didn’t really live it down. So I’m milking it while I can. Teehee. Milligan loves me!

Thank you, Lord.
I want more days like this, please.

But, for some reason, I’ve come over all tearful now I’m home. It doesn’t make sense?
Although, I still haven’t told Dad the truth about meeting his friend John yesterday.

h1

Protected: Christmas; humbug

November 25, 2009

This content is password protected. To view it please enter your password below: