What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

My mum tells me having a walk will do me good. She's someone who can't sit still and will insist on going for a walk even if she's ill because fresh air is good for you. I know what she means but it won't do ME good.

I am paying for my afternoon out already! In bed now with a headache, sore throat is trying to happen, tinnitus...blah blah. So boring. I had such a nice afternoon so I'll take the hit. Good for me mentally...not physically.

Has anyone else learnt not to read about their prognosis online? I have hospital and GP within next fortnight so I'll check with them then but I was startled to read 2 years for my condition.

@MewithME it's tricky as people try to understand but they're not in your position and not experiencing what you are. I guess you have to be quite firm about what will help you and what won't.

@Kitterkitkat I think reading about our respective illnesses must be a very personal thing. I suppose it's a balance between finding support and arming yourself with knowledge but trying not to scare or depress yourself.

When I was first diagnosed I was really scared. I'm a single parent with no support so I could freak myself out about getting worse and not being able to work and losing my house. I have my moments, but I am more confident about managing it now.

For illnesses that are degenerative or God forbid, terminal, you're dealing with another thing entirely.

We're here though if you want to talk about anything. Or just have a gentle bit of distraction

Good morning all!

Sorry you are feeling stressed @Kitterkitkat the internet can be both a blessing and a curse. Your consultant and GP will know all about current treatments available, and where you are with your illness. Hope they can give you the best information.

Such a change in weather today, it's so much milder. Just had a shower and hoping for a cup of tea in a minute. Since DH chopped my hair for me I'm finding a shower takes about 10 minutes less. Maybe I'll move to a crewcut and save even more time! I still tend to use too much shampoo out of habit, so it takes extra rinsing. But combing afterwards is a dream.

I got very low yesterday, feeling a burden. IBS is flaring so have had a hot water bottle clamped to me most of the time. Poor DH has overdone things with lifting. He has an old back injury and a limp, and has started to use a stick to ease the pain in his hip and knee. Realistically, he should see a consultant and find out about surgery, but he is putting it off. I know he doesn't want to be out of action before we move house, and that is still up in the air. The new house won't get finished until this one is sold, so we will have to be in short term accommodation without stairs if we can find any. We could stay with DD1 but again, stairs are an issue. He can get up them but it's painful.

So anyway I had my usual despair about being unable to be any physical help. I don't drive any more because I get so fatigued I don't feel safe, so he does all that too. So out it all came and he was so lovely, said he couldn't possibly manage without me so he doesn't think I'm a burden.

I spent some time trying to think of ways to lighten his load and my genius idea is pre-prepared baby potatoes (which I had no idea existed) He spends hours peeling spuds (carefully and laboriously) so I have ordered some from Waitrose !

Oops sorry for the moan xx

Moan away @TeaAndStrumpets ! Goodness you've been in such good spirits throughout all your trials and tribulations lately, you're well overdue a little grumble. Your husband sounds wonderful. Despite being a bitter old divorcee, firmly on the shelf now I think, I reckon I'm a romantic at heart. Nobody would think I am, but I love seeing a good marriage and a happy relationship. My best friend married well. I love her husband, he's such a good man and father.

Anyway, that's very sweet you thinking of the spuds! I am going to make a Sunday dinner with Yorkshire puds today.DS is excited. I do hope he'll make someone a lovely husband one day.

I'm still on my first coffee and don't want to get dressed but I must.

I have the Xmas decorations to go back in the attic and a ton of washing to do.

@TeaAndStrumpets it would be weird if we didn’t all feel like that sometimes, wouldn’t it? Everyone does, healthy and poorly. It’s a tough, stressful time and you’ve coped so well.

@Orangesandlemons77 does my head in when people try to recommend pseudo science or some crackpot on social media recommending some sort of fast. Thanks but I'd much rather listen to my oncologist who will know the latest peer reviewed research.

@MewithME thank you I do get a wobble sometimes. Interesting about romance. Don't give up!

@Kitterkitkat I refuse to as the Internet isn't always up to date. I think my cancer prognosis is around 3-5 years. However research and science changes all the time. I choose to ignore it, trust in whatever medication my oncologist recommends and just live. Every human is different and I know people with the same subtype as my cancer on 5+ years with no evidence of disease. I'm too busy trying to live than look into statistics.

What is worrying is people go on the internet to spread their theories and gain followers i e clicks ie cash. And of course people are wanting something to give them hope.

@TeaAndStrumpets my situation is obviously much different from yours. My chemo was starting to take my hair and it was stressing me out seeing it everywhere. My DH shaved it for me but it was so sore still and dead. He then buzzed it for me, its about #4 at the moment. Oh my word if i ever live long enough for it to grow back properly I'm never having it long again. I literally just rub a small amount of shampoo into it every now and then and it dries in minutes after a towel rub. Not having to worry about doing anything with it in the morning is a blessing. I don't feel comfortable going out without a hat on mind but it's sooooo easy nowadays.

Absolutely and it is scary that these people are unvettted or have just done some free courses to make them look professional rather than actually being qualified to give this information.

@Oioiqueen my friend has had breast cancer twice and bowel cancer once in the last 5 years. She now has a very fetching cropped hairstyle and actually it really suits her - she would never have tried it!

@TeaAndStrumpets my husband says I look better with a short hairstyle. I think I just look like a ginger bog brush personally 😂 I've never had a short hairstyle since I was a baby but I think the vacuum cleaner and bathroom shower drain are thanking me nowadays.

😁

I have sent the relatives who are recommending things a link to the friends and family session the NHS fatigue clinic are running next month and also said if they want to know more the film Unrest is quite good.

I know what you mean about miracle cures etc. in fact the first session of the NHS course focused on as acceptance using the stages of grief model - denial, anger, bargaining depression and acceptance I think it is. Anyway they said looking for miracle cures comes under the bargaining bit.
..
So I guess in my case I'm at the acceptance stage probably with bits of the others stages mixed in but relatives are at the denial and bargaining stages.

That's a charitable way of thinking about it and makes me feel less angry.

@Orangesandlemons77 thats very interesting about the stages of grief. I know I struggle particularly with my mum. She seems to think my tumour will shrink from chemo and they can just cut it out so I think she is in the denial stage. I have said several times that it is in more than one place and she will most likely outlive me. I keep saying that we need to treat this like a chronic illness, its probably not going to kill me tomorrow but will do at some point. I think she'll get there eventually but it is tiresome. I need to chat to both of my parents about amending their wills (I am due to inherit from both) for my children to inherit instead through trusts but I don't have the energy at the moment to do so.

I think denial is a way of shielding themselves from reality in a way, maybe with time she will get there Oioiqueen.

@Oioiqueen so sorry to hear your diagnosis. I can relate to advice from relatives. I have rheumatoid arthritis and have had many people suggest fish oils, glucosamine, turmeric... the list is almost endless.

@Kitterkitkat I was "lucky" enough to be diagnosed in 2000, when the Internet was only just getting going, and i certainly didn't have constant access to it. So i could only go on what my rheumatologist said, and only worried about my blood test results if I was contacted by a doctor. Now I'm refreshing the nhs app and fretting over increases 🙄

Anyway, today I've taken the dog out and put away a tesco shop.

Now on sofa but I really want to tidy and declutter a bit, so will have to rouse myself.

DH is grumpily taking down the Christmas decorations. Going for a bath soon. Still feeling flu like but thing I'm a bit better after all this resting recently

Not done much today apart from experimentally washing a down gilet. It has fluffed up brilliantly. I usually only wash pillows etc in summer so I can put them in strong sunshine to dry, but I risked the tumble dryer (with spiky balls) and it is fine.

Next up is to activate my new Kindle page turner, now on charge. Living the dream!

I got all nostalgic thinking about re reading Strong Poison and it's only 77p on Kindle so....

I must have brain fog @TeaAndStrumpets ... I was wondering what device a kindle page turner is 🤣

I was thinking...oh yeah ..save some energy from swiping 😁

I think your NHS trust sounds better than mine. That all sounds actually useful!

The worst one I have to deal with is my colleague...she's vegan and into health stuff (but had the worst sickness record because she won't even take a paracetamol). When she is in a good mood, she's always telling me about oxygen chambers or eating xyz... She is what I would call doing toxic positivity. Always saying 'you look well' when I feel horrific. And I am doing better than I was (which I know I'm not as I do a monthly functional capacity test). It's tiresome and tiring.

It's a little clip for your kindle with a small remote paired to it. Press the remote and the clip signals the page to change. Ideal if you're reading in bed, so you can stay warm under the duvet without having one hand out in the cold!