How to get support without feeling whiny...

[Knitwit2020]

Ok so maybe it has been a bad day here..but just curious how everyone manages getting that all important family support ...without sounding pathetically whiny...You know if you had a fractured leg and were in a cast..everyone can see that and of course would offer help..but we are carrying our pain inside and perhaps that's why no one undetstands and just assumes you're ok and coping. I think some of this lack of understanding comes from the fact that perhaps you've always been strong and coped with any other illness and never required assistance..So just wondering how you all manage to get some support without having to always ask for it..As this journey continues I can see the strong link between stress and pain..Thanks everyone..stay safe, stay well..KW2020

[scats]

That's a good question. I found that the first time fatigue struck when I was in the middle of cooking their dinner it got their attention!

[DogAgilityObsessed]

I read out choice bits from this forum to my husband. There is only him and me at home but I suggested I needed his help and now he is getting ready to position himself as my protector when we start seeing friends again.

I have one friend who, when I told her of the diagnosis said everything will be fine and I’ll be back to normal really easy within a short time. She said the people on forums like this were the odd balls who either liked to complain a lot or who had something more complicated.

At least I can ignore her and walk away (or put the phone down). You can’t do that with your family. I think I’d be tempted to have a meltdown and do nothing for them for a day or two.

I have a Steroid Dependent/Adrenal Insufficiency wristband (I am hopeless at carrying something like a blue steroid card around with me). Maybe something like that could also act as a visual reminder for them.

Have they read Kate Gilbert’s book? It might give them more information and they might be more receptive to that than you telling them.

Sorry I’m not much help. Look after yourself.

[Constance13 in reply to DogAgilityObsessed]

Of course we are all odd balls. That is why we all get on so well together.😂 I'm very glad to be among them.

[SnazzyD]

Ah, the perennial question, thus far largely unsolved. Some attain the dizzying heights of all friends and family understanding but they are a rare beast.

I do think it takes quite a big mental shift for them when the super strong, cape wearing, doer of all things and holder of all roles gets a dose of Kryptonite. My asking muscle is the only muscle that has not weakened through lack of use and Pred.

[MrsNails]

It’s a tough one KW - Kate’s book is a good start to give to Family & Friends to read but really no one ‘gets’ it unless they’ve had it or got it themselves. And of course they know someone who did have it & cured themselves with some mystical magical potion in a week!

Keep in touch & you’ll get a lot of support from everyone on here.

Kind Regards

MrsN

[Sandradsn]

4+ years on,no one gets it! I think people forgot after I was 6months into it.I gave up mentioning anything.

My husband just blames the pred when I'm not myself.

[DogAgilityObsessed]

And I find people think I’ve got fibromyalgia. I must remember to mug up on the difference before I see my agility chums in August

[powerwalk in reply to DogAgilityObsessed]

I have both, fibro and pmr..... try explaining that one, its exhausting!!!☺ i just havent the energy!!!

[Maisiek]

Oh I can so relate to this! I’ve always tried to be sympathetic towards the invisible illnesses like ME , but this really brings it home. Nobody likes a whiner do they: I wish I knew the answer : might get the bracelet: sending virtual hugs x

[Cyclegirl54]

I understand what you’re saying. People look at me( not lately mind you as I’m pretending to be a hermit😀) and say’ you look well’ .

[TheMoaningViolet]

Hm, I think that everyone's sympathy has limitations, and especially when it comes to something as unfamiliar as PMR. I find my husband not just not showing understanding, but being almost hostile when I muse on my worries about it developing into GCA. (I suspect he is even more terrified of the possibility than I am.) My daughter is much more affectionate, but she is only 12, so I am still expected to do everything as if nothing is happening most of the time. On some level, this is good, as one would not want to be perceived as a perpetual patient. I just look after myself and do what I need to do (i.e. usually sleep a lot) and if I need a sense of camaraderie, I read posts on this forum.

[DorsetLady PMRGCAuk volunteer]

Hi,

Give them bits of this to read - healthunlocked.com/pmrgcauk...

And tell them, although you look may good on the outside, your immune system is attacking your body on the inside and you feel rubbish much of the time!

And yes, they do expect to carry on as normal because - as you say it’s a hidden illness.

Might help - albeit more about mental issues -

talkspace.com/blog/what-is-...

[PMRpro Ambassador]

I don't - I gave up hope years ago! But of course when OH isn't well it is the end of the world.

I just refuse to do what I consider unnecessary (a lot of cleaning!). I won't commit to doing something I know will be too much. Obviously being carer for OH means there are a lot of things I can't get out of entirely or I just have to be very firm about NO! My family live a very long way from us - so they tend to just be seen in a holiday setting and they help with shopping and getting food ready - though eating out or a takeaway pizza is a favoured answer here. When we are there - they do the cooking. Visiting one daughter is much harder than the other - the vegan one poses problems!!!

[piglette]

There are an awful lot of people who appear to be OK but are in considerable pain, not just those with PMR. My sister in law looked fine with cancer, in her early fifties. In fact she died a few months later.

[Constance13 in reply to piglette]

My sister in law was the same. She was incredibly cheerful and just got on with life. I often think of her when I have a bad day and feel sorry for myself.

[bakingD]

I find the people that care about you ask you how you are- have long stopped telling people what’s wrong unless I need to

I used to get fed up with people saying how well I look it’s not that you want sympathy it’s just that I felt they didn’t really believe there was something wrong!

[MrsNails in reply to bakingD]

The ‘What’s Wrong With You Now?’🙄Face

[Arflane97G]

Is very hard, I seem to have fallen into a bad habit of having a major meltdown every now and again which is not good! Very exasperating when my husband says’ sorry, I forget- because you don’t look ill’ . I am possibly my own worse enemy as tend to rush around looking after every body else - need to sit back a bit more often I think

[MrsNails in reply to Arflane97G]

I started ditching the Makeup if l needed the GP to take me seriously💄

[Constance13 in reply to MrsNails]

😂😂😂 You could have used flour instead of powder.

[MrsNails in reply to Constance13]

Nice One!

[TheMoaningViolet in reply to Arflane97G]

Ha, I do that as well! Occasional meltdowns are like a hobby to me it would seem.

In the effort to make my life easier, I recently stopped cooking every meal as I started to feel like I was running a boutique hotel. So, I delegated most of my dinner cooking to Waitrose, and I felt so much better for it. But I do feel guilty when I see them eat this, even though I bought good quality ready-meals. They don't seem to mind though.

[Marilyn1959]

Try downloading a few copies of the 'Spoon Theory' by Christina Miserandero and asking friends and family to read. It is a pretty short read with a very potent message; in layman's terms it highlights what it is like to have a chronic illness and associated fatigue and the impact this has on you. It is not medically based, full of complex info, but more a narrative story form. An easy read for all!

[Knitwit2020 in reply to Marilyn1959]

Thx Marilyn..I read "Spoons"thankyou... and in fact did print some copies...will see when the appropriate time is to pass it along to family...I usually take a more direct route in voicing issues..but this has all been new territory for me ..but thankyou again for the advice...take care KW2020

[Constance13]

I think every doctor should give a copy of "Spoons" to all new patients. It would help them as well as family and friends.

[Whippetygirl]

Very well put. I think this is one of the most difficult aspects of this illness, I have the same problem on a day to day basis but in an emergency my daughters have been amazing.As you say it is not noticeable on the outside and we rarely complain, as mothers we just get on with things.

[Knitwit2020 in reply to Whippetygirl]

Hi Whippetygirl..yes I vasilate between thinking they don't care.. to.. they care so much they cant stand to ses Mom feeling so weak.

Plus they have their own families to deal with..I have two lovely daughters and three beautiful grandchildren so I count my blessings..

And as I speak ...my wonderful husband of 46 years is actually vaccuming !!!!!. Wow...so perhaps we all get the support at some time or other..we need to be patient and gracious....but sometimes my anger rises and I just want to do it myself and get it done with...That stubborness is what has kept me going for 20 years of Rheumatoid Arthritis in form of PsA and 2 fractured cervical vertebrates ...and now this PMR dx...

Long journey ahead folks and it might be a bumpy one..take care..KW2020

[Coffeebeans]

I will be reading these responses with interest. I had a meltdown last week and told them all I was at breaking point and why did I have to go absolutely mad before anyone listened.

Point was made and lots of help has been given and they have taken control of some things but really, I would prefer to just say look I'm tired and need help and they listen without the drama!

[PMRpro Ambassador in reply to Coffeebeans]

Tell me about it ...