I have a list of health related phone calls to make and a telephone appointment with the consultant rheumatologist tomorrow morning. Plus a hospital appointment on Thursday re Dupuytrens. Feel unable to deal with any of it, just want to rest.
How can we do these things and deal with essential household chores ie ordering online food deliveries, organising medications, looking after pets, etc. when we are feeling so unwell.
Has anyone ever had it suggested to them as I have that they look into Enduring Power of Attorney?
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Rachmaninov2
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I am so sorry to read you are feeling things hard to deal with, feel unwell and want to rest. I think quite a few including myself could empathise with you there. Sometimes it can all get too overwhelming and I think with this pandemic it has only served to heighten things and has tested and challenged us in ways such as trying to get appointments, treatments, changes to meds, diagnosis, test results in respect of our health and day to day living such as shopping, getting chores done, caring for others including pets and trying our uppermost to keep safe and well. At the best of times having RD this is hard enough but with Covid and all the measures we are having to go through it can be exhausting. I have moved house and had to do this just at the point of lock down and the only way I could manage this was in two stages finishing on Friday and to be honest it has and is taking it's toll. So I completely understand and all I can say is take one step at a time. Try not to see the bigger picture if that makes sense and break down things into small manageable steps. Sort of prioritise what is important such as your appointments, your pets and what may be can wait for another day or two. If you have someone you can delegate things to that may help, if not do what is necessary and pace yourself (I'm learning this one at the moment). As for Enduring Power of Attorney.....is this something that has been mentioned to you and if so by who? Sorry that sounds like I'm prying which I am not, but it's just that having experience of two parents who I had Lasting Power for in the latter years, it is something that they chose to do and put in place for themselves and no one suggested it to them. I think it is good to address your own personal circumstances and keep readdressing them as time goes on. As you know your own personal circumstances it may be helpful to look into it, or you may wish to take it on board for the future. Take care and hope that your calls relating to your health are positive and productive.
Thank you for responding Pippy, I’m afraid I’m feeling sorry for myself right now.
You must be exhausted having moved house on top of everything else, reading this has put things into perspective, I appreciate you taking the time and energy needed to reply.
You are right about taking things one step at a time (I have always been a ‘whole picture’ person’.)
I have a Social Worker who is trying to organise some personal care for me, she actually rang me back after a recent phone conversation and mentioned Enduring Power of Attorney! It did surprise me at the time.
I had the same about a month ago and it was far too much to deal with at once so I made a note of what needed doing in what order and did a couple of calls of things a day. I put phone reminders on my iPhone with notes as sometimes forget things I’ve written down! It took all day to sort two calls out as I was being meddled around by a receptionist, so it’s exhausting especially when you’re trying to do other things and feel less than 100 per cent. Can you do the Thursday appointment by phone or do you need to be physically there? Good luck.
Thank you for your kind words. My RA is under good control for some time now. 🤞🏻 I hope you have a very worthwhile consultation for your hand. It’s so hard to be in the midst of all this whirlwind of activity but it will calm soon and there will be less to organise and think of for a while.
Hi Rachmaninov. I can't help you here I'm afraid but I just wanted to wish you all the best for your telephone appointment with the consultant tomorrow and the f-2-f at the hospital on Thursday, I hope they go really well for you. xx
It's such a pain literally when you're kept waiting like that! Hopefully once you mention it to your consultant, they may get the meds to you pronto and when this week is over and done with, you will be able to rest. 🤞 xx
Yes, you are right you have brought to my mind the phrase ‘this too shall pass’. 🙂🌤
Rachmaninov2 i tend to write a list then tackle 2 things one in the morning and one in the afternoon. If I try to do say 3 or more phone calls I get fatigue and stress kicking in so I have learnt to do bite sized chunks per day rather than a feast.
This morning was RA clinic call and that was all I pencilled in for today.
Good days I do more but when overwhelmed I do less.
Do what is important i.e house cleaning is not
Bigs hugs and make sure your consultant knows how you are feeling mentally too as a big part of RA as well.
More valuable ideas Deeb, thank you. Yes, the same as me fatigue and stress leading to inflammation and pain!
I will try only dealing with my call tomorrow.
I know you are right that cleaning isn’t important, some days I feel the same, others I gel that I am losing control over everything which in itself results in anxiety.
I didn’t think to mention the psychological side of RA. but I will.🙂
I've been having a ton of issues with well life recently ! It all got a bit overwhelming especially when being in pain; My sister suggested trying mindfulness and taking things one day at a time (as suggested above).
I find with my arthritis each day can be quite different from each other (concerning pain and stiffness etc) so mindfulness should work well with this. I'm trying to do slightly more on the days I feel OK and some days I just try to chill !
A few weeks ago everything just came to a head, had some bad news and I literally gave myself a bad headache due to high blood pressure. It does no good stressing, so breaking it down helps alot.
Maybe try and get a tad more organised so do your online shopping on days you know you've got nothing else on etc.Plan days to recover from things (hard i know when dealing with Drs appointment).
Also come on here and let some steam off, a problem shared and all that x
I can't help with the power of attorney, everytime I ask my mum to sign hers over to me because I want a holiday she says no 😅
No seriously I would have thought that was a pretty big deal, maybe ring citizen's advice about that to get some Info ?
I’m sorry you’re feeling so overwhelmed and I agree that you just have to take things a step at a time. Housework is a low priority because it will need doing again before long so leave it till then!
Focus on your health needs and the two medical appointments this week. I hope they go well and you feel brighter soon.
I put both Health and Finance Lasting Powers of Attorney in place at the start of lockdown as I trust my daughters to act in my best interests. They only come into play if you lack mental capacity so they’re a useful back up and once set up you can forget about them. It was easy to do it online and there are extensive notes of advice to guide you.
I will do that, lots of good advice saying the same (can’t all be wrong.)
I can understand why you put Health and Finance Lasting Powers of Attorney in place in these uncertain times, our lives can change in a very short time.
I will look into it and see if its the right thing for me at this time.🙂
Hiya Rach (hope you don't mind me reducing your name?). I'm sorry you’re feeling such emotional & physical problems just now. You've received good advice re time management & such, nothing I can add there I don't think.
What concerns me a little is the Social Worker suggesting you look into EPA (which is now called Lasting Power of Attorney). Forgive me as you've not been with us too long & as such we don't know your circumstances (nor do I wish to) but this, to my mind anyhow, would depend on a few things. One being your age, another what, if really needed, what support you have in making important decisions such as managing your financial affairs etc. I don't need answers, these points are intended for you to think about. You see we only considered applying for LPA (on behalf of my father in law for him to apply) whilst my mother in law was still able to agree & sign, she had Parkinson's & Lewy Body Dementia). The same with my h & his brother for their dad when the time came.
It's a difficult one because I don't wish to assume your situation is such that you actually need consider it, though I would hope your SW would be aware of your situation better than us. It could be that once you settle on meds things will be very different, this may not be appreciated by your SW. Then if you've decided on LPA there's a concern it may be used before needed, whilst you're still capable of managing your affairs say. Your current symptoms described in the title may well ease or go now you've started proper treatment. That mountain you're looking up at currently will become a hill, then a steep incline before becoming a road, a bumpy one sometimes possibly but still not that mountain ever again.
An alternative you may wish to consider is Ordinary Power of Attorney. This is less stringent & more for such instances as stays in hospital etc, to manage your affairs in the short term.
I hope you don't think I’m prying, I just want you to mull over what you think would be best for you, as would all of us here. I hope your hospital appointment goes well & given a little time things become better generally. We're here whenever needed, no problem too big or small.
You’re welcome: I did one just before Covid broke out after watching piece on Martin Lewis, more for my lovely kids peace of mind tbh, so glad I did now but it’s a personal decision x
You have had excellent advice and guidance, which I fully support. Just want you to know I'm thinking of you and as you say 'this also shall pass' . Such a challenge when you are in the middle of it all.
Try and take care of yourself as much as possible & be kind to yourself as you are precious.
Hi Rachmaninov2, some great advice above. just wanted to join in to say that I was sorry you were feeling so bad currently, and just picking up on the words you put in the title of your post I thought I would mention something. I seem to remember from a previous post of yours that you are taking prednisolone currently? If so I just thought I would let you know that I have experienced very similar feelings to the ones you describe when taking prednisolone, it seems to give me a feeling that something awful could happen at any minute if that makes sense? So part of how you feel currently may also be down to medication, which is not to say you should stop taking it, but hopefully to give you some comfort that it may improve when your medication changes. Take care x
Hello Monkeysmum, thank you for your your response. I have started to act upon some of that advice already.
Yes, I am currently taking 15 mg prednisolone a day (which I have only been taking for about 3 weeks, and hasn’t controlled things yet).
I’m so sorry you have felt similar to me, it’s horribly debilitating isn’t it.
When I mentioned it to the consultant this morning he said he thought it sounded like an anxiety thing rather than due to medication or the disease itself.🤔
Well only you know what is normal for you Rachmaninov and if anxiety isn’t, then there is the possibility of it being prednisolone related. It’s well known to cause mood changes, for the majority of people this takes the form of euphoria, but for a few unlucky ones it’s the opposite. Since I joined this site several other people have said they have experienced the same thing, usually at higher doses, but if you are quite sensitive to prednisolone it can occur at lower doses too. Hope you feel more like yourself soon. Xx
I have had anxiety for some years, and what I am experiencing is something very different. I feel that it’s either some other physical cause or medication related. I think it’s time for another call to the GP.
Hi, I’m sorry to hear you are struggling, and I send you a big virtual hug.
When things start overwhelming me (which thankfully doesn’t happen too often) I really appreciate how much fresh air and exercise help.
I don’t know your physical situation, so this may not be relevant to you, but I make sure I get outside for a socially distanced walk every day. Apart from the physical benefits I find it massively helps my mood and positivity.
You might find just a change of scenery for an hour, leaving everything behind temporarily may help.
I have my dog, which I always say is my best medicine!
I agree that fresh air and exercise are important and used to really enjoy gardening. At present not able to get much exercise as RD is not under control yet and feeling pretty awful.
As soon as I can I will make sure to get out, I know what you say makes sense.
Like you with your dog, I get great comfort from my cat.
Pippy makes some very good points. You have to decide yourself and implicitly trust the person you are giving this responsibility too. Take legal advice.
Hi Rachmaninov2. I tend to do the same as Deeb 2908. I'm a great one for lists. When I feel overwhelmed by the things I know need to be done I write a list and put things in order of importance and work through the list one thing at a time. Even if I only manage 2 things I feel I have at least achieved something. My attitude to housework has changed over the years. It will always be there and it can wait. Dealing with the things that keep you well are more important. Good luck with your appointments and tell them how you feel.
I am taking the advice about making lists, and like what you say about putting things in order of importance, I also like to feel that I have achieved something.
Am slowly learning that getting well is top priority.
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