Auntie Sceb

Paper crafting my way to an apocalypse scrapbook with some knitting sewing and cooking thrown in.

ME/CFS Recovery? Remission? Misdiagnosis?

For several weeks now I have been feeling better.  I have been dancing Ceroc (modern jive), salsa, belly dancing and burlesque!!  I have also been walking in fact I walked 7 1/2 miles on Friday, worked Saturday evening, went to Ceroc afterwards and today walked 7 1/2 miles again.  I have no PEM (post-exertional malaise) and I have been consistently doing more, ie no boom and bust.  I don’t know what’s happened but I’m happy it has.  I want to make it clear now I started doing more because I felt better and able.  I didn’t do more and therefore felt better as in graded exercise.  I have some theories but let me show you my pics first from my walk round the local reservior.

Reservoir   Reservoir Reservoir and my shadow   Wellies Reservoir by night   Reservoir by night Reservoir by night

So what has happened?  I can’t pin point it exactly.  I will tell you what has happened to me but this is not meant as medical advice merely a dialogue of events.  It may be worth discussing with your GP if anything stands out to you.

1  I split up with my boyfriend and moved in with my sister.  Unlike my boyfriend my sister had no expectations of me and didn’t push me to do more than I could.  She just let me ‘be’.  Because I had no pressure I felt able to relax and I think I finally rested and my body was able to start to heal itself.  I compare ME to landing in quick sand.  Everyone (well not everyone but those not in the know) tell you to fight but actually I believe in ME this is what stops you getting better.  If you were to land in quick sand you know that fighting would cause you to sink so you would try to relax then gradually ease yourself out.  Instead with ME we are made to feel we’re not trying hard enough so end up struggling and getting stuck deeper.

2  I had been struggling with heavy periods for some time.  Sometimes my iron went low but often it didn’t but you have to think what is it doing to your body to make that extra iron.  It got to the point that I had finally managed to get back to working two days a week with ME but then once a month I would flood so badly I couldn’t work if my period fell on my work days.  I begged my GP for help as I just didn’t want to take more time off sick.  So I now have the contraceptive implant and take the contraceptive pill without a seven day break.  The result is I have no periods so no problem.  My GP suggests this may be related to my ‘unstable hypothyroidism’ (see 3!!) and that once it is more stable I should start having the 7 day break.  I suspect it may be related to endometriosis which my sister has just been diagnosed with.

3  I have had hypothyroidism for several years.  I have regular bloods but I usually have to increase or decrease my levothyroxine each check.  More recently I have found myself to be more stable taking a different dose on alternate days on my GP’s advice and taking it at night – usually it is recommended to take in the morning but as I work shifts ‘morning’ can vary considerably also there are several foods that stop thyroxine from being absorbed effectively.  These changes seem to have kept my levels within range. Though on higher does of thyroxine my levels were normal but my heart rate when up to 130 (normal 60-80) and I felt quite anxious!  My GP says that maybe I was misdiagnosesd with ME/CFS and ALL my problems could be down to my hypothyroidism yet still won’t refer me to an endrocrine specialist!!

4  My vit D was low enough to need on prescription on one occasion.  When my levels were within range my prescription was stopped.  I found my fatigue and my bone pain increased.  I now take vit D regualarly and whether down to the above or the vit D I have very little pain (now off Tramadol and Amitriptriline) and no fatigue.

So am I fully recovered?  I don’t know but I feel good right now and I’m happy for that and I’m going to make the most of it…

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Warwick Castle – Pens

I went to Warwick castle last weekend.  I wouldn’t recommend it for people with ME lots of walking and not sign posted very well.  Still it was interesting particularly the falconry display which included bald eagles.  I took my nephew who also has mobility problem so we strugglled quite a bit – in fact I’m still recovery.  My nephew got in as disabled with my as carer with parking it costs us less than £22 which is a lot less than a standard ticket which reflected how we were restricted as we couldn’t access quite a few areas.

Anyway this post is ‘not about that’ (as my grandma would say).  It’s about my pen hoard!!  Any trip I go on I like to get lots of pens.  I love pens.  I love seeing rows and rows of shiny pens!!  I’m quite partial to a pencil too.  Particularly the mechanical kind, handy for suduko and hanjie.

Warwick Castle pens

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ME/CFS Cleaning,Tidying and Pacing

Key to feeling okay with ME/CFS is pacing.  If I stick with in my limits it’s the difference between feeling ‘okay’ and feeling terrible.  The problem is when you feel okay you are tempted to do too much then you crash and feel really bad for days in my case but weeks for many others.  I live in a flat so it is relatively small but if I’m not careful I think I feel okay I’ll clean the lot – bad move.  The way to deal with it islittle and often so I looked at different cleaning schedules to see what might work for me.  Bear in mind for many my schedule would be too intense even though I have broke things down into small parts.  I must admit I don’t always use but then I realise I’m not feeling so good!!

The schedule I chose is a rolling schedule so you can start anywhere and if you have a bad day you can carry on where you left off.  Other schedules are Mon – Sun but that type of schedule does not fit in with my work/life or my health.

Here’s mine:

In the middle you can put daily tasks like washing up but I hope someone else will do that!!

I found the blank schedule here and she also has her own version:  http://frazzledjoy.blogspot.co.uk/2014/03/daily-cleaning-schedule-family-friday.html

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Tardis hat knitted by me as a birthday gift for my brother

I thought I would share my latest knitted creation.  I love knitting but my brain has to be working fully to complete a project or I end up undoing it in tantrum and it ends in tears.  This turned out well without tears because it is a pattern I used before though the colour work is different (I think that is a knitting term!).

tardis2

Tardis hat. I used http://artemisadornments.com/2010/12/05/meribel-boarding-hat/ for free hat pattern then made my own tardis chart based on a hat I saw on Etsy. It’s not technically accurate but looks nicer than other tardis patterns I did a practice piece of.

Using the same pattern I also made this hat a while back.  I used a free robin chart from http://www.craftsy.com/pattern/knitting/other/free-robin-chart-chart-only/66191

Robin hat knitted by me Auntie Sceb

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Why I Would Rather Try To Find The Funny Than The Meaning Of Life

Yesterday I went for one of those hand car washes while you shop, to save energy for something else (see spoon/bean theory https://auntiesceb.wordpress.com/2015/02/19/spoon-theory-or-bean-theory/). I happily drove off and as my windscreen was smeared I put my wipers on. Only my wiper flew off and I thought I can’t believe the irony of getting a car wash to save energy now I’m going to have to buy a new wiper and fit it so much for saving energy! And as I thought this ‘Get Lucky’ (Daft Punk) came on my Ipad set for random. So I thought the universe is laughing at me. But I got home and my wiper had not flew off it was resting on my bonnet so I really did get lucky and all was well with the world.

But my story pales into insignificance after this post

Peg-o-Leg's Ramblings

Sir Loin of Beef Sir Loin of Beef

Some look at life’s journey as a pitched battle, and some as a noble quest. Either way, a smart knight should be prepared for the dragons he or she is bound to encounter along the way. My weapon of choice is a feather duster.

It has only snowed once so far this weird winter.  I took advantage of the unlooked for boon of ice-free roads here in the country last week and went for a walk.  My mood was somber as I set off down the road, well bundled against the bracing cold.  I needed the lift that nature always gives me because I felt lower than I have felt in a long time.

I was thinking about my dear cousin, Moe. She’s experimenting with multiple chemo treatments, locked in mortal combat with the cancer that has spread despite her efforts. We recently learned that her…

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Brain Fog

What’s brain fog?  Sufferers of ME/CFS use this term to describe how their brain doesn’t quite work as it should.  Forgetting things, unable to understand things, unable to calculate things, unable to find the correct word, use the wrong word, or think the right word but say a different word (dysphasia).  I used to love a lovely novel or TV programme with twists and turns.  Now I read ‘easy read’ or ‘trash’ and love reruns because if I watch something new it’s not until I watch it about three times I get it! Probabaly out of all the symptoms this one frustrates me the most .

I was going to talk about another problem but as brain fog just effected me cooking dinner that trumped the other issue.

Just mashed my potatoes, drained my veg, got out my sausages (Quorn of course) – still frozen.  The oven was switched off.  I have no idea if I ever turned it on.  So I had a lovely dinner of mash, carrots, peas and gravy!!

Don’t worry if this happens to you and you don’t have ME/CFS it doesn’t mean you do, it does happen to us all at some point.  But with ME/CFS it happens a lot!!  Just today my 13 year old nephew was laughing at the words coming out of my mouth which were all the wrong way round thankfully my sister knows me well so understood me anyway so we had a giggle and a lovely cup of tea and didn’t think about it anymore!

The internet has it advantages help with this condition.  You can write something, save it, write some more.  Spelling mistakes are highlighted and can be corrected.  Some errors will still get through but it’s still a lot easier than talking!

The edit buttons is also very handy!!

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Spoon theory or bean theory

I have ME/CFS relatively mildly.  Midly because I still manage to work two days a week.  Severe would mean I’d be bed bound at best.

I manage to work two days a week with ‘mild’ symptoms because I stick with in my energy limits.  If I go outside these limits then I feel ill and may only be able to deal with my basic care needs.

Many people with CFS/ME and indeed any long term condition are familar with Spoon Theory

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It explains how we spend our energy well, though spoons are an odd symbol.

I really like another theory involving beans  http://sweetbriarsisters.com/blog/cfs-awareness-understanding-crashes/

I like this explanation because it explains why we can do more one day and not another though not scientific as it says, it’s definately how my body works.  It also demonstrates how I might risk a fun day out and deal with the consequences.  It doesn’t mean I’m better it just means it’s worth risking the crash for.

It also explains why I do very little housework. particularly hoovering which to me is like running a marathon.  It’s the crash without the reward.

Some days I go out if I can find the energy to cook a meal I then do not have the energy to eat it or, I feel too nauseous to eat it.  Often though I don’t feel it until the next day or the day after that but this depends o how many days I’ve been pushing myself.

Lately I find I can work two days a week and then maybe visit someone or go shopping on another day.  But for two weeks I’m on annual leave so in theory I can do about 3 things this week.  However I’ve learnt by combining activities I can do a little more so today I’m visiting a friend for a couple of hours then visiting my Grandma on the way home.  Half the battle is getting washed, dressed and driving so I’m saving that energy doing one trip.

For many people with ME/CFS this would be lovely as they are far more limited.  I’ve largely come to terms with what I can and can not do but there are days when I scream inside ‘It’s not enough’

So I turned to my new found hobbies and keep them next to me and when I remember I write down (or just think) about 3 things I have achieved that day and things look a little brighter.

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