since being diagnosed i have been on a rollacoster, ride of emotions, I came out of hospital on 30mg of pred and thought that i would just be able to go back to normal life, what i did not expect was that i would have no energy and even getting out of bed to go to the toilet would be debilitating, I care for my 5 year old granddaughter and she had to miss school on friday as i could not get up to get her there, i then worked myself up into such a state that I was having a tightness in my chest , head paid and Jaw pain and palpertations , my husband took me to A&E ,ecg was normal but I was kept in overnight.
since being back home life is getting slightly better this week, after having had a panic attack on saturday i have finally come to the realisation that I can only do what i can and not to push myself , this is very difficult for someone who has been used to doing everything and now even if I put a wash in the washing machine i feel that i have achieved at least one useful thing in a day .
Things will get better ,i just know that it will take time and that its not the end of the world if i cant do something , going back to see the rhematologist on 24th October and hopefuly continuing to improve slowly but surely in the right direction.
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lynabelle
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Oh dear poor you! It does take time to get to grips with this monster we have acquired, and do not push yourself please....it is your worst enemy, so do not feed it! It just loves us to overdo everything so we can get properly knocked off our pins and cry, so be gentle with yourself and let others help and if they don't, learn to ignore what needs to be done. Yes it is an accomplishment to get a washing load in, I yearn for the day I can actually peg it out as well, but the clothes horse is as far as it gets in this house and that is exhausting.
I think looking after a 5-year old is very brave of you, I can just about manage to sit at the swimming baths looking at the new baby in her carrier for half an hour (while big sister of 3 years gets dried and dressed after her lesson), even picking her up is agony, but we learn to do our bit, do our best and soldier on.
Heartfelt best wishes.
Hi Lynabelle,
Try to realise that we are all very different in how we can manage this illness and how we react to prednisolone. It often depends on what state of health we are in when we develope PMR and what responsibilities we have. Some lucky people are still able to go to work, but for many that is not possible until the illness is well under control, and that can take a long time. As well as physical work, stress can have a very debilitating effect on our bodies and, therefore, we all have to learn to pace ourselves. If we don't then the "burned out " feelings will happen and, at that point, it's so easy to go into panic mode.
If you pace yourself, have rest periods and get as much help as possible from your family, then you will improve. We all have to learn to adjust to this illness. JC is right, PMR will take every opportunity to drag you down again.
20 months ago, when I developed PMR I could hardly move. 30mg of pred put me right in 3 hours, but unfortunately I came down on the doses too quickly and had a big flare whilst on holiday in Wales last november. A GP at the local hospital put me back on 30mg again. 11 months later I am now on 8mg.
I could go into more detail about diet etc, but if you need more advice we are here for you. There are some wonderful people on this web site. Ask anything you like and I'm sure you will get a good reply. Don't lose heart!
Pats
in reply to
Pats, do go on about diet, please.......it has a major effect on my body, I am on rice milk and no bread this week to see what happens, and already I am more energetic after just a few days! Also, found goats cheese not half as bad as I thought it would be x
in reply to
Hi JC,
You lucky girl! Cheese, what! I have been lactose intolerant for 20 years and suffer when ever I eat any milk products. I often crave for cheddar like mad, but if I do cave in and raid the fridge at one in the morning - I think the "red" might have something to do with it, then the day after, the bathroom becomes my main place of abode for hours. Goats cheese, yes it's lovely, but it still upsets me. I chew 2 calcium tablets every day instead. WHAT A LUCKY GIRL AM I !!!!!
Apart from potatoes, I have stopped eating all of the "nightshade family" i.e. tomatoes, peppers, and aubergine - which I never ate anyway. I seem to get away with potatoes, but I always leave the skin on. That way they become unrefined carbs. I almost never eat any foods with added salt and or sugar. Prednisolone removes our body's ability to handle these two substances and eating them makes us bloat up - we store fluid and look fatter than we are.
I exist on wholemeal bread, lean meat, fish and loads of veges. I do eat white rice, but only with stews and curries that are loaded with veges and herbs. I grow lots of fresh herbs on my kitchen window sill. I try to keep what I eat as natural as possible. I like eggs, I sometimes eat pasta. I use margarine made from olive oil.
I never fry any food, but roast and grill all meats and fish.
I also take quite a few suppliments, oil of evening primrose, a multivitamin, co-enzyme Q10 ---------------
Are you still awake. If you are, here's a confession - I sometimes let my partner treat me to a Kentucky or ---- an icecream!
I enjoy a glass or two of red wine because it keeps me sane and I sleep better.
Pats.
ps.. I am recovering from a viral illness. 10 days and I feel I've survived and am on the up again. Still on 8mg but felt good today. x
in reply to
Sounds like a really good way to go, like you no nightshade, but did not know about the spuds and skins trick, salt and sugar are my downfall but have bought sea salt and fructose now so that may do instead. I bought some Cornmeal Polenta yesterday to try my hand at making crackers (to have with my cheese ;-o) but the funniest thing happened yesterday, my daughter made me a sandwich......white bread, ham and tomato and a few hula hoops on the side! I am lucky to be typing here at the moment, I will be good today.
I also have a little herb garden now, but the hot and sweet peppers I grew this summer are still out there looking good but I ignore them all.
What about breakfast Pats? This is meusli for me or porridge with sultanas. Got any alternatives? Luckily I don't drink these days as a glass or two would lead to more! Ice cream oh my, oh yes, what would I give, but I found ice pops a good substitute for those evening cravings, made from juice with no additives there is not a lot of harm there. Let's face it, we ALL cheat......and why not, I ask??
Unlike you I have ditched steroids completely, so each day walking is a blessing, but getting rid of the extra pounds I piled on (was fat before) is proving a nightmare, I always have a full fruit bowl but too many years of bad habits have taken their toll, I used to be so active and ran around burning energy which I can't do now of course. I bumped into an old work colleague yesterday who I have not seen for 2 years and she did not recognise me, then she said "What happened to you?" Big wake up, I am now on a mission to restore myself!
Best wishes for a speedy recovery, reminds me to get flu jab pronto!
Julie
in reply to
Yes JC,
What about breakfast? 2 slices of wholemeal toast and Bertolli marg. for me along with 2 big mugs of tea sweatened with canderel. As I've said, I can't have milk, so all the lovely meuslis and porrage are out for me. I've tried soya milk, but it doesn't agree with me either. There's only one good aspect to this forced regime - I can't eat biscuits or cakes, but that stops me eating sugar too. Over the years I've stopped craving for them and it made it easier to cope with prednisolone and the "no no" foods.
Of course, I cheat too. Sometimes it's unavoidable like when we are out and go into a cafe for a snack. Lets face it, most food outlets don't cater for folks who need special diets.
Have you thought about using herbs instead of salt. I buy unsalted crisps and use black pepper to flavour them. It keeps the pangs of hunger away until the evening meal which is where I get my main source of calories.
I must say, you are very brave to manage without pred. I have horrid side effects when I reduce the doses and have to use ibuprofen to help. Are you pain free now and if not, how do you cope?
Pats
in reply to
Wow Pats, yes how do I cope, well to start with I no longer work so if I need to have a few days just resting I can, which is major. I take 400mg Cuprofen, tart cherry and turmeric all as anti-inflammatories. I have 15mg Co-codomol from the GP and have done so for years, but only take 1 or 2 a day, usually before I go out walking as it does help.
My housekeeping standards have slipped, I spent the summer sleeping basically, have hardly any social life, but plan my days out with usually 2 resting before and 2 after....however saying that now I have ditched the bread I am not half as sleepy! I take 500mg of Pantothenic acid daily (also known as B5), multi-vit, B12 and lots of fresh vegetables. I have decaf tea and coffee, very little dairy now, no spuds (boo hoo) having carrot and swede mash instead) I buy my veg already prepared because chopping is painful, and try not to eat chocolate and oh dear, I adore cake, but just ignore it now.
On the plus side of no pred, no more nightmares!, no starving hunger, no swelling everywhere, I do not have the terrible dizziness I experienced and I have stopped worry about my bones crumbling further. I have also stopped taking my anti-depressants (with the help of St John's Wort to help take the edge off the withdrawal symptoms) now I am on basically a drug-free lifestyle and feel much better for it.
On good days I swear I am better off.....on bad days I forget anything has ever worked at all.....bit like a recovering addict, one day at a time.
I am mostly pain-free once I get going in the mornings (my husband calls me a little penguin), but I still have to stop to let it all settle down again between the supermarket checkout and the walk back to the car, but you know after that initial 20gm dose of steroids, the reduction process made me wonder why I was on it at all as there was no real benefit, and I would say now I am sort of equivalent to the pain I felt at the 15mg level with just good diet, food supplements and NSAIDs.
However, if GCA was a threat.......different story! Who can say what the future will hold for any of us.
Julie
in reply to
Julie,
you sound as if you're doing really well. It's so good that you no longer have to work. Although I miss my job so much, I know I couldn't cope mentally or physically with work now. The money would come in handy though! It's the drops that are so hard to cope with, and they say this drug isn't addictive. Ha Ha! But once I get through them I'm fine and can see light at the end of the tunnel again.
Hi there. For the last year or so when I had PMR I was looking after the grandchildren too. But I found that if I was going to have any energy for the afternoon stint there was no way I could haul myself out of bed in time to do the school run in the morning. So we got into a routine where my husband would do the morning run and I would do the lunchtime pickup and the afternoon shift. If your hubby can't do that, the school will almost certainly have a pre-school club where the little one could be dropped a bit early. I know it's not ideal, but not doing that early morning stint could make the difference between the childcare being manageable for you and it being too much. Talk it over with your family - don't leave it till you crash! (have been there......)
one of the mums at school picks her up on her way past the house, i have been getting up and managing to get her ready and my husband picks her up from school when he can.
Understood. Yes, they will. and I believe these diseases, GCA and PMR are tougher than they, at first, seem. Have had days like that and agree with your conclusions. these are very serious illnesses. It is not expected of cancer survivors to just get up and "resume", so it should not be expected of us. These are serious inflammations. with serious consequences. wish you a good week. many are dealing with similar situations. wishing you health. Whittlesey
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