Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Evening all.... I sound like a PC Plod character don't I?

Been so lovely to see the sun. Haven't been out in it beyond popping in my garage to grab laundry and stuff. I did enjoy watching the tractor in the field ploughing while I worked today though.

@Orangesandlemons77 I think visible can get obsessive but I feel more confident the longer I have used it. I take the daily score with a pinch of salt. It's accurate but some days I will get a 2 and still have to go to work. They are always keen to explain the score is about stability not how well you feel. In theory you could be feeling awful and getting 4 because your readings are consistent.

I am trying to be better at taking my vitamins. I need to try hard to get my strength back/back to baseline. I felt tons better today but was struggling after work with bad fatigue and have loud tinnitus tonight. I've been asleep this evening already. Couldn't keep my eyes open.

Has anyone with MEcfs tried D Ribose? I forgot about it. It's usually a powder and comes in big pouches, but I found it in a capsule combined with some other good stuff. It's expensive but going to try it again.

Being chronically ill is expensive isn't it. Is that what PIP is for? I've never tried to get it because it seems so stressful.

@Realisation14 I meant to say about the Fitbit. It does a different job though visible and Fitbit both measure heart rate etc. I called my band my sickbit. Fitbit for poorly people when people ask what it is!

Rather than push you to exercise for fitness, visible is giving you data on what might trigger a crash and what your energy envelope is.

Thank you for explaining! So you think it's worth getting one then? Sounds interesting.

@Realisation14 I think like @Orangesandlemons77 suggested (I think it was Oranges anyway)... Try it for free first before you get the band.

I'm still on v1 of the band. The V2 does sleep tracking and I don't want to wear it all the time.

I think it's worth a go. I find it useful.

Put it this way...I've had MEcfs for about 5 years. I had a GP diagnosis in 2021 and I'm not sure when I got visible but I was on the beta trial for the first band I think, so I've been with it a good while now. I've not got worse and I'm still managing my job, although it's challenging. I think I was lucky getting early-ish diagnosis (though took a long while for a consultant to confirm it). I tried to do a lot of reading to start with and got the big pacing book and paper trackers but I found all that too difficult. For me, the gadgets are good.

Morning!

Got the old adrenaline going last night with my heart rate up, it was a relief to get up and calm down. Last week was rather busy/stressful and Mothers day was lovely but tiring.

I was supposed to be resting yesterday but went down a few internet rabbit holes. DD1 often gives me little puzzles to keep my brain active. She was trying to identify an artist by the initials and had drawn a blank. Enter Mum the bloodhound....problem solved but it took hours! I discovered the artist had got married and changed her surname and signature. Rubens never did that. The Patriarchy innit.

Morning Lovely people, hope you can enjoy the sunshine today. I’ve managed my first dog walk in a while. Dippy dog was fabulous til we met a dog on the path where we had to pass and then she barked like a crazy feral dog but DH did a sterling job of luring her past wirh cheese! I’m sitting in the garden in the sunshine now trying to ignore the jobs that need doing!

I also just use the free app for visible. I sometimes find it gives me permission to rest/ pace and just serves as a reminder to listen to my body. And useful sometimes to say to DH I’m a 2 today, I need to be careful with my energy. Or alternatively, I feel okay, I got a 4.I think I can manage a coffee out! On days I absolutely have to manage something, I don’t check it for the very reason it might cause me more stress so I guess it’s about seeing if it’s helpful for you.

I’ve tried D Ribose @MewithME Ive probably tried most supplements over the years and yes spent a fortune! I would say of all the supplements that one is worth a try. I may order some actually as it seemed to help a bit but I had to stop it when I was on the keto diet as it made my carb count too high. Though I’ve had to stop the keto diet as it made my cholesterol too high! 🙄 It’s good to put in water and sip through the day. COQ10 is another I take for energy but again expensive! I also take magnesium and ashwaganda at night for sleep.

You always make me smile with your observations @TeaAndStrumpets and glad you solved the puzzle!

Morning. I did my walk! I’m sure everyone was staring at me, but I managed 2 miles. The last half a mile or mile I was absolutely dragging myself back to the car, but o enjoyed the birds and the sunshine and I’m now on the sofa. I didn’t use my walking poles as my shoulders are too bad for that. My back went almost numb and so stiff quite early. Perhaps if I had taken some pills first it might have helped.

@Orangesandlemons77 I have a butrans patch. It delivers a controlled dose of morphine over a week.

The glue can be very sticky so if you're struggling to remove it a warm wet flannel held over the patch for a minute helps. And then baby oil to get rid of glue residue from skin.

I'm also using visible band (not the sleep one). I tend to ignore the morning stability score as I keep forgetting to do it before getting up, so sometimes it's before breakfast, sometimes after it and taking all my meds. But it's interesting seeing what impacts me each day.

Morning all. Well done for getting out for a walk @TodayIsatrickyone and @FurForksSake

It's interesting reading everyone's experience of Visible - I've got the free app and I can't quite decide how useful I'm finding it. It's interesting to find out my HRV and everything does seem to trend together in logical ways, e.g. you can really obviously see the effect of poor sleep or extra physical effort.

Terrible sleep last night but it's another lovely sunny day. I think I'll attempt a quick round the block walk, then a bit of time sitting in the garden.

I'm fascinated by the talk of the Visible app. I read about pacing some years ago and started using an oximeter which was an absolute revelation. I imagine the Visible app functions in a similar way but with more information.

I do find if I feel rough in the morning my heartrate is up and oxygen is down. I had a bad night last night with palpitations but had to go out to the osteopath. I could feel the adrenaline fluttering in my chest. When I got home my oxygen level was 90% and heartrate 110. After I rested for 20 minutes it was 99% oxygen and 90 HR.

So if I had the Visible app would it have alerted me not to go out? Or does it mean you can chart progress (or not) over time?

Well done @FurForksSake for managing your walk. Mine is literally a few mins walk around the corner to a field where there’s a bench, so I walk for a few mins, sit and repeat! But I had many years of not being able to walk even a short distance so it feels like an achievement.

@TeaAndStrumpets the visible app has a morning stability score where it measures your HR plus HRV ( heart rate variable) using the phone camera on your finger. It doesn’t measure blood oxygen. Plus you raté your sleep from awful to good and then it gives you a score between 1 and 5. 1 dreadful-5 very good!
You’re supposed to do it first thing though I forget often! But over time it works out your average so can tell you if you’re out of balance. It’s a bit hit and miss I find but like you on bad days my HR is high and HRV low. You also record symptoms from a list so it uses that info too.

@TodayIsatrickyone I suppose it could be valuable during diagnosis because you've got it there on a screen to show the specialist. I am a great one for carrying on regardless so something like this would maybe give a warning.

Yes same here about carrying on regardless! I’ve just been to sit in the garden and ended up trimming an overgrown shrub! I mean it needed doing as overhanging onto neighbours fence but I expect I’ll pay for it later! And it’s rather wonky so the temptation to go and try to tidy it will be there every time I go outside 😂

Yes I'm using the free version got a 2 today so juts stayed in the garden, was thinking of a walk in the park but might do that on a better day.

I too find it helpful for showing others (like DH) I'm not sure about paying for the band though, I had a Fitbit and found it annoying / made a mark on my arm, also the cost as well.

I also have anxiety and don't want it to make that worse and feel recording the activities etc might be an extra hassle. Hope I don't sound too negative, I just know what I'm like!

I'm feeling pleased with myself for getting up and going out this morning now I can have a bit of a rest after doing the laundry. Because recently have been in bed most of the morning and not getting up till the afternoon.

I will see how it goes, feel a bit adrenaline-y for some reason maybe the light and sunshine!

Hoping for a good afternoon for all

This is me exactly. "I might just as well...." !!

That’s exactly it @TeaAndStrumpets 😂

I've got very slack at tagging activities but I kind of know what's what anyway.

The big thing for me is eating lunch and then having to go to a meeting or something straight after. My body doesn't cope with digesting food and doing anything.

I had a small cheese toastie at the work café then into a meeting. HR over 100 and I've blown the budget now. I need a lunchtime lie down really.

Oh that's a very familiar feeling @MewithME - I keep having to remind myself not to go for a walk straight after lunch as it really adds to the heartbeat shooting up.

I'm finding the sunshine makes me feel a bit better but I haven't got the energy to match what my brain thinks I want to go out and do. And I really need to find my sunglasses as it all feels too bright when I do go out.

In bed now after quite a stressy day at work - don't really want to fall asleep too early as I then wake up early (4am today) but I might not get a choice.

@FurForksSake just catching up. Sounds like an awful lot of pain. I hope you manage to find a combination that works for you.

I'm starting to debate whether continuing to work is the right thing for me any more. My attention span and concentration is just so low. I thought I was smashing it today, hit 4 hours of work and fatigue hit from nowhere and I was done in. The brain fog is so hard at the moment and my mood keeps shifting. I constantly just feel flat and angry but I don't know what at as nothing as specifically causes it. The trouble is I don't know if it's the chemo or the thyroid issue that is contributing to it all. Whilst I only work part time I worry I just won't be able to make the benefits stretch to what I earn. I could live two years, I could live ten years and I don't want to put the pressure on of us living more frugally if I don't need to. I also think it's the finality of once I quit I just won't find anything suitable again and that's it for my life and I'm destined to just sit and rot at 38.

Really feel for you @Oioiqueen - it's such a difficult decision. I'm pretty sure I'd feel better in some ways with less/ no work, but it also acts as a distraction (and to be honest, some days I'd have no human interaction without it).

Someone was saying a while back about the sleep ratings on Visible - I totally agree that four doesn't seem enough. If you believe my smartwatch (Fitbit-like but a cheaper version), I slept from 8pm-5am last night, but I was very definitely half-awake for a lot of that with a busy brain. I feel like I need something between 'fair' and 'bad'.

Just work today and waiting for a courier to pick up two heavy work-related parcels which I've just had to take downstairs and feel I need some recovering from!

Decisions at work maybe don’t have to be permanent. You could ask about a career break or sabbatical maybe? Or just not think it has to be forever if work is not working and js negatively impacting your quality of life you may need to think about how to make it work.

my body didn’t let me sleep, I’m sore today so not going for a walk or doing much of anything. In knackered and I have to drive to another town later for hydrotherapy. If I’m recovered I might try and push through for a walk tomorrow.

I’ve got hand clinic on Monday for hand splinting. I’m hoping they might give me some advice or even an X-ray to have a look at my hands as they are so painful.

Thank you both. I know in time that as my cancer progresses I won't be able to work and it'll be forced rather than a choice. We live rurally and on chemo I shouldn't be mixing with crowds so it's not even like I could drive out somewhere and wander around to fill my time if I did stop working. At my age everyone is working or with their kids so I feel massively isolated already. I only work 16 hours across three days and from home so it's not like OH could put in any conditions to help really. My next scan is June and I'm debating whether to wait for the results from that and then go off on long term sick. It gives me time before then to see if the medication helps, how much worse the neuropathy gets and with the better weather to what I can fill my time with. I think I need to speak with Macmillan also and actually see what none means tested benefits I'd be eligible for. I think with a secondary diagnosis I'd fall into the ESA support group and basic PIP at the moment but I don't understand how people confidently navigate this system.

@Oioiqueen it's such a difficult decision to make about work. As my health has improved i have been considering getting some part time work, mainly for the social life but this would be in addition to part time caring responsibilities. And of course it's not guaranteed that I'll find someone at work to gel with.

My partner is very supportive of me not working- he's pleased that i can sometimes walk the dog and make our evening meal, and doesn't want me to become bed bound again.

But I would also like to feel like a 'normal' member of society again. It's a hard decision to make, and for me i won't be going back to work until my caring responsibilities end.

I'm also rural and try to see a friend or two once a month. Otherwise it's WhatsApp and my Internet friends 😁

Sitting in bed with a coffee and catching up on posts. I got the ESA (cont based) after working based on that I had been working for several years and had NI conts. I'm in this group under task completion meaning I can't consistently complete 3 tasks or something like that.

CAB might be useful as well as MacMillian Oioiqueen also I have PIP, and we get some UC as husband's a carer and not working that much atm (he's self employed) which sounds like a lot but it's not really as the COL is so high nowadays.

Also these calculators might be useful for you

www.turn2us.co.uk

https://www.entitledto.co.uk

as well as the PIP criteria and ESA support group criteria. As well as a good site for PIP information.

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/how-decisions-are-made/

https://www.advicenow.org.uk/get-help/benefits/employment-and-support-allowance-esa/employment-and-support-allowance-esa

pipinfo.net

I think they can pay some mortgage interest / housing benefit with the UC as well but we don't get that bit. (due to not having a mortgage anymore the only blessing here)

Sounds hard the not working decision but might be better if could rest more. I know someone with ME / CFS who gets regular rest breaks in her day so 15-20 mins per hour I think it is. Might be something to ask about?

My GPs must be getting fed up with me. Feels like I am always doing those e-consults. And now I have that dentists referral going on too.

Today it is pain, it is getting a bit much and have asked to change from co-codomol to a butrans patch (based partly on support from here, thanks!)

The GP will ring back this afternoon. One benefit to that new system seems to be you can send a message in the morning and usually get a ring back the same day, which is fab for me as no waiting weeks to see a GP and I prefer a call rather than going in due to the fatigue anyway.

I also find it easier to explain in writing and they read that before the call.

Anyway that is this afternoon. It looks sunny out so might try and get out in the garden before that. Although yesterday one of the neighbours who is a bit odd was out there.

They probably regard me as a bit odd though! Oh well. Have a good day all