What are you up to today if you have a chronic illness? Thread 7

[MewithME]

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https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Yes @bedfrog me. I do wish I could find something that would fix the fatigue. I e tried things in the past and they only treat the symptoms for a little bit then I’m back to square one which sucks. I had a better day yesterday but I think I’m having a crash today. Even though I’ve had CFS since my teens, I still don’t like the way it’s unpredictable and anything can cause a crash and then you have the better days

That's so frustrating @bedfrog

Hope you have a working oven soon @TodayIsatrickyone

Friend has agreed to come to me, instead of me venturing out, which is really helpful. I had to lie down for about an hour after a quick shower, so it's not a day for pushing things.

It's madness. My BMI is 16.6 so quite underweight, don't drink or smoke, eat boring but healthy food. I don't understand about LDL and HDL but when I saw the consultant endocrinologist who diagnosed my ME he said the good one?? Is excellent and he said don't worry about statins. My GP surgery keep pestering me about statins as my total number is over 6 but I just say no thank you.

I did look into diet and realised the vegan spread I used for baking and erm spreading has a lot of saturated fat so I've stopped making GF scones which I used to eat for breakfast. I also discovered that carrots are very good so I've doubled my portion size. I have a lot of olive oil in my diet as I make dressings for rice etc. I do eat meat because I have so many food intolerances and allergies I need the calories and protein. Of course the GP now doesn't test me for cholesterol so I've no idea what it is at the moment.

Oh if someone could find a fix for the ME. My consultant recommended a nap every afternoon, Vitamins D3 and B12, and sunshine or a lamp. He also suggested having holidays to give the immune system a break from my normal surroundings. Sadly holidays are just too much!!

Oh that is so annoying about the oven! Can you get a replacement that just slides in? I think ours must be 20 years old too. It is white, and since we bought it white seemed to go out of fashion, but it's coming back now! I have bought a white single oven for the next house, which I bought off a seller on ebay during a 20% off coupon week. Brand new from a bricks and mortar shop with great reviews. They emailed me very apologetically saying the model I'd bought was out of stock so they offered me a free upgrade to one with a steam function! Great service. Can't remember the name but I think it was somewhere like Stoke on Trent.

Thank you for all the pottery love 😊

Have been to the allotment this morning and luckily the rain stayed off. Not up to much, so spent the time weeding, which I love to do 🌱

I'm still shattered despite improved sleep so this afternoon will be spending in bed, dozing and drinking tea ☕

Have a restful day all 💕

I was also told I have high cholesterol following routine bloods after a relapse (ME)
I opted to tweak my diet and re test in 3 months. I was doing a keto at the point of blood tests which helps my ME and enabled me to lose weight but unfortunately sent my cholesterol high.Though the last GP told me my good cholesterol and ratio were okay but the recent GP was muttering about statins so I need to make changes. I don’t drink or smoke but I’m overweight and was trying to lose it ( BMI 27)
I diid discover that coconut oil and peanut butter were high in saturated fats so I’ve cut those out. Plus butter & cream and limiting cheese & red meat. Still using good fats of olive oil, avocado, nuts, seeds. I bought some of the cholesterol lowering spread so will see if any of that helps lower it. My weight isn’t shifting any so far though!

@TeaAndStrumpets hopefully we will get the oven sorted. We can do most things in the air fryer though I’d ordered a large chicken thinking we could roast it this weekend that may or may not fit!

If you love weeding @Swanhilde wish you could pop over here for a cuppa! You’d be in your element 😜

Thank you all for the welcomes!@Swanhildeabsolutely gorgeous! Do you sell them?

I can't remember who said about the HBO channel being added to Sky. Any recommendations as to what to watch? I'm cross that I paid for 12 months of Disney in October and now that's included 😆

Hope you're all bobbing along okay today. My achievement was making a sandwich. But the laundry basket is giving me a hard stare and the dishwasher has no room left in it! We won't mention the dog!

Oh and did I tell you about adult social services? I can't remember. In case not, someone referred me because I fell down my stairs 9 weeks ago after recovery from a fall 3 weeks prior to that. Lots of injuries.

Anyway, an appointment at my house, pressure to complete a financial statement. I said I didn't want any help, I have help! My cleaner has fallen down the stairs twice in a year, I told the emergency plumber to be careful and he came down them and the dog often rolls down them like a can of baked beans!

I was told I had to fill in the statement. The council wanted to charge me the same amount I receive in PIP and UC for help. Nothing left to pay bills, food, dog insurance, my credit card...! I told them to jog on!

Thank you @DinoLil and thank you for thinking they are salable! 😊

No, they are purely just a relaxing pass time for me (apart from the slab rolling, which is not relaxing) and classes that my employer offered to us for free. I am hoping that they do so again 🤞

Sounds like you need new stairs @DinoLil if everyone is taking a tumble! They shouldn’t have pressured you to make a financial statement, that’s very poor and anyway, you have help

I think weight loss can temporarily make cholesterol high before dropping again. Dh takes a plant sterol supplement which is apparently very good at lowering it.

I’ve had an email from community cardiology asking me to do an at home pots test, I need a new bp monitor so that’s coming tomorrow.

went to the office for a few hours today, resting now. I’m in for more hours next week.

I think I just got so annoyed about thr letter my gp sent me re cholesterol- it wad a generic letter that I felt put the blame on me. I didn't even get an appointment to discuss it either so now I've got to try and drag myself up for the 8am scramble. Its just one thing after another with nothing fixing the actual issue which affects my life - the ME!!

Hope you're all enjoying the sunshine today! Dh is taking me to the theatre tonight

It's so nice to have people to chat to that get it. Im autistic too so find it difficult to socialise usually.

@DinoLil it's difficult to see what adult social services are doing for you if it's give with one hand take with the other! Maybe an extra handrail would help.

I didn't know HBO included Disney, or is that something else? We have Now TV which I believe is a freebie with our EE TV package. I don't think we ever watch anything on it though.

@FurForksSake DH adds a teaspoon of Mornflake oat bran to his morning porridge. Our son in law reduced his cholesterol by doing this.

Good luck with the POTS test.

Enjoy the theatre @bedfrog!
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I've also had the generic high cholesterol advice a few years ago and it's so annoying when you don't do the things they're telling you to stop - mine definitely runs in the family, although I did manage to get it down into the ok range through diet and (lots of) exercise. I can't imagine it's great now.

Had a nice visit from friend who brought me cake from a local cafe. Was struggling towards the end though - her partner was delayed picking her up and I had to just lie down and chat to her for the last half hour or so. We've both seen each other in all sorts of states of illness/ chaos/ despair though so it was ok 🤣

Doing nothing else today, hoping for a bit of energy to do some basic housework tomorrow - apparently the dishes will not put themselves in the dishwasher!

I can’t remember the last time I went out in the evening, my energy is usually run out by the afternoon. Enjoy the theatre @bedfrog and I’m also autistic so I get the hard to socialise

@martha79 my brother had a triple bypass many years ago and his cholesterol reading had been 3!

@JewelleryCat I also run out of energy before evening, it's a pain.

I know, i usually have a huge slump in the afternoon then a second wind in the evening for some reason. Then I end up going to bed too late! I don't usually go "out out" though.

Happy to meet a fellow autistic though! I like my peace and quiet so I feel maybe I don't struggle with my illness as much as an extrovert would.

Haven't caught up yet. Brain is fudge...but I am now on leave.

Thought I'd check in with you all but haven't caught up on the thread.
DM is struggling with her broken foot bless her. So hard to see your mum in tears on the phone. Hoping to pop up to see her tomorrow to help her do things that will make her feel better like change the beds, do her ironing etc. she has my dad but, as brilliant as he is, housework isn't his strong point despite his attempts!
My car went bust this week too which was so inconvenient. Managed to get the kids to school with help from a dear friend so I'll drop her some flowers off next week when she's back from her weekend away. So greatful to her. I offered to get the bus but she took one look at me with my walking stick and told me to get in the car 😂
Kids have started half term today so let them slob around this morning until dh got home at lunchtime. Then went for a rest in bed but woke on a panic at 10 past 3 realizing I needed to take dd to gymnastics! So frantically rushing around, got there and realized I hadn't eaten. So raided the vending machine!
Glad to have a weekend with dh at home before next week with the kids on my own. Even more greatful that my new sofa is coming soon too. We've gone for exactly the same sofa just in a darker colour because we know it's so comfortable for me especially but the kids love it too (they both have sensory difficulties). So looking forward to that!

This is exciting! Dh and I are going to see a comedian tomorrow night to celebrate our anniversary which I'm so looking forward to.
I'm similar, I get a huge slump early afternoon where I feel like I could sleep for days then I get a second wind into the evening and I end up listening to podcasts for hours in bed because I enjoy it (and I deserve to!) but then I'm tired in the morning, it's a vicious circle! Hope you enjoy the theatre, what are you seeing if it's not too outing?

@SwanhildeI'd buy a few! Love candles. I never have enough holders. Have you looked at Etsy?

@JewelleryCat I just need a bannister! It's a 200yr old cottage, teeny tiny twisty stairs and no handrail.

Got a someone coming Monday to price one up.

@TeaAndStrumpets Exactly!

Just caught up on the thread @FurForksSake your bright yellow car will be well appreciated by all the kids who play "rainbow car" on road trips. Basically have to spot a car of every colour of the rainbow and yellow is always a tricky one so you're doing God's own work there! My DC love to play