The Garden Fence - help and support in tough times

GreyQueen

dragonette, you flatter me. I developed ME afting having glandular fever as a 20 y.o. student in my final year at uni. Never have been right since but things do improve, and I presently work 60% of full time equiivalent over 4 days and sort-of rest on the other three.

Haven't gardened since last Saturday and now won't be gardening until after Easter. Have been pottering around the city centre and sewing today. Plus playing online and doing laundry.

One thing you will discover is that chronic illness can give you focus. Because energy isn't as limitless as it is for your peers, you become picky about how you spend your time. You also become very efficient at work-arounds and managing the ups and downs of life. And have a tendancy to cut through the b.s. of life. I also can't muster the emotional energy to sweat the small stuff...........:p

I eventually had the diagnosis of ME confirmed about 15 years after starting it. It's a default diagnosis; they eliminate everything else and ME is what's left. A consultant endrocrinologist at a very famous hospital offered me her professional opinion that ME isn't one illness, but a group of related ones, and that there is so little research going on that it may be decades before the medical profession really understands what's going on. Remember that some doctors were insisting that tuberculosis was a psychological complaint and wouldn't be dissuaded from it well into the twentieth century.

I have a double whammy of ME with a rare metabolic disorder but I conside myself lucky to be alive and incredibly fortunate not to suffer chronic pain and that all my limbs are present and correct, even if my energy levels are sometimes comparable with a 3 amp fuse.;)

If there's anything you (or anyone else reading) thinks that I might be able to help you with, please feel free to ask, either on the open thread or a PM. I've received so much help, good advice and encouragement from the good folks on these forums that I like to give back what I can.

candlelight_2013

I haven't seen Pops for a few days, are you Ok Pops?

Candlelightx

greenbee

As you say GQ, often a lot of time is spent eliminating things before a final diagnosis is reached - generally the things that are easy to test for. Although I had tests several times for MS and Motor Neurone. They were always negative, but the neurologist firmly believed that there was something wrong and that my symptoms were real (it's difficult to prove that people feel pain, but my physio was prepared to back me up with evidence about my pain threshold amongst other things).

Finally, as part of investigations for something else, I was diagnosed with chronic iron deficiency. Most of the symptoms I'd had for years are also symptoms of anaemia, and disappear when my ferritin levels go up. They also reappear as they drop. So finally I have a solution to the restless legs, random pain, poor grip, vertigo, lethargy, insomnia (not doing quite so well on this admittedly), exhaustion, breathlessness, tinnitus, migraine, acid reflux, choking, sores at the corners of my mouth, hair loss etc that I'd assumed were just 'normal for me'.

So I've gone from living with chronic illness, through an acute illness (and living from hospital appointment to hospital appointment) and am now slowly learning how to live with not being ill! (I still have regular appointments - quarterly for blood tests, and hospital treatments are now (hopefully) at 18 month intervals, plus instant access to specialist support for symptoms and side effects - but my life no longer revolves around my next appointment).

GreyQueen

:T I'm glad you've turned the corner, greenbee, and long may the improvements continue. I have isshews with iron as well; with constant supplementation with ferrous fumerate, I just about scrape into the bottom of the normal range. As in the red line of 'me' on the blue column of 'normal range' is right at the bottom.

And isn't it great not to feel ill?! I'm a pretty healthy chronically-ill person; rosy complexion, bright eyes, shiny hair, [STRIKE]wet nose[/STRIKE] errm maybe not a wet nose? Mostly only see my GP once in a blue moon as my conditon is stable.

I savour the old proverb that many a creaking gate hangs long. I intend to hang long myself; life in interesting and I want to see what happens.

greenbee

GQ - my new GP is doing good work helping my stablise ferritin levels due to the concerns about taking vast quantities of iron supplements over the long term (also, I was losing weight, which meant recalculating the dosage regularly to avoid poisoning me). I've now had 6 months with no supplementation, and levels still appear to be going up. But apparently theories around supplementation are changing, particularly for those with absorption issues rather than due to blood loss (menstrual issues/coeliac disease etc) so you might want to ask for an update (I won't give medical advice, but it's about improving your ability to absorb iron rather than just shovelling so much in that some of it HAS to be absorbed as you are completely saturated with it!).

And 'normal' levels for ferritin can still result in you feeling pretty unpleasant - I'm supposed to keep mine above 50, as that's the point at which I'm asymptomatic. My circulating iron levels NEVER dropped below normal, which I guess is why I used it all up!

You never know... if the alternatives work, you might be able to give up the high-fibre diet

chickens11

Greenbee and Greyqueen....I admire the way you both deal with your ME , its very difficult living with long term chronic illnesses that seem to take over our lives......Sheila

GreyQueen

I don't appear to have absorption issues, it's due to menstrual losses, and I'm really looking forward to the end of that wretched business, as have been having troubles since my late teens. Am skipping the occasional period so think my ovaries aren't always firing (I'm 50 so probably starting menopause, my GP says average age for finishing it is 51, it was 59 for Mum, please not that long for me).

I'm expecting to feel a heck of a lot better once no longer menstruating.

Funnily enough, iron tablets don't actually make me constipated, I must be one of the few people who get away with that one. Not that I'm complaining, y'unnerstand.:rotfl:

Softstuff

MrsLW, as adorable as Pushkin is (I wanna furry snuggle!) I'm distracted by your wallpaper, I love it. Where was it from? I'm thinking it'd be lovely here.

As regards doctors, in England I was told my limping and knee problems were all in my mind. Over here they found a golf ball sized tumour in my leg, which after physio and orthotics is fine. I'd been told that my stomach problems were stress and IBS, over here they correctly diagnosed duodenal bile reflux, gastric reflux and at the time chronic gastritis, so now I'm on meds and absolutely fine. I was tired all the time but no diagnosis in England... I was actually B12 deficient and getting nerve damage. The difference a good doctor can make to your life is absolutely amazing. Prior to the correct diagnoses I was a mess, some days I could barely move from the sofa and I looked like death, now I'm (more or less) the picture of good health.

I've been advertising things we didn't want for free on gumtree here - like lumps of old carpet etc, and today it went rather well... I casually mentioned that we had other things in the shed and the nice chap was interested, so we'll get rid of those later in the week. Beats paying for rubbish removal and it recycles too.

[Deleted User]

Hi SOFTSTUFF the shop we got the wallpaper from in the village has long gone under in this recession but I will ask DD if she still has the manufacturers name and the name of the pattern. Be warned though it was horrendously expensive and is only up on the two chimney breast recesses in DDs lounge, 1 roll cost nearly £70 but it's one of those once in a lifetime aquisitions that is so 'right' for her room which is all Gustavian scandi greys and wood. It came in lots of different colourways including a reverse of this one.

camelot1001

Pushkin looks adorable, high praise from someone who doesn't really 'do' cats! I don't dislike them just never had one and not sure I altogether trust them, much prefer a dog as they never seem to have a hidden agenda!

I take my hat off to those of you with a long term illness, especially when you have had to fight so hard for a diagnosis. Are Doctors more informed these days? I think some of the older doctors were afraid of having to learn about new/different illnesses, if it wasn't 'ordinary' it didn't exist.

Had a very slow day yesterday, couldn't get going at all. Planted some seeds (probably still too cold here) but they are in the little greenhouse so we'll see how they go. This house has a south facing rear and tomatoes and herbs grew very well last year so have decided to have a go at more veggies. The house I was in before also had a south facing garden but was plagued with wild rabbits that ate everything in site. The hens didn't help either!

Feeling more productive today, must get some more nice hangers and sort out my new wardrobe, there are clothes hanging in DS2s and DDs wardrobes whilst I didn't have one so need to sort it and get it all together again.