How do I explain that I need help?

[Azabat]

My beloveds are really great when they can see that I'm swollen or clearly having difficulty walking. It gets less clear-cut to them when I am reacting to the medications. How do I tell them that I am so sick that I can't think? I don't know what to feed myself, and I lack the brain power to sort it out. I'm having those migraine-type headaches complete with serious light sensitivity and I don't know what to say to them. I need someone else to plan for now, someone else to help fill the gaps where my brain just doesn't work right now. More to the point, I guess, is how do I do it and not feel like I'm failing?

[Someonesmother]

Show them this comment for a start. Have you heard of the spoon theory it is a really good explanation of fatigue and chronic illness. Go to this page she has some great resources

butyoudontlooksick.com/arti...

[LizzieMay in reply to Someonesmother]

Hi there, thanks for posting that link. Thats such a good explanation for the constant planning that I need to do, which has become such a part of my life over the last 14 years especially.

[Someonesmother in reply to LizzieMay]

It is amazing when you explain to people in those terms how they start to understand. In saying that people get to the point where they get sick and tired of you being sick and tired. I have withdrawn from a lot of things because it is easier than trying to explain once again for the millionth time that I am too tired, too sick, in too much pain, too exhausted, can't get out of bed etc etc. Do things that look after you, and let everyone else fall in behind.

[Azabat in reply to Someonesmother]

Thanks SOM, I had heard of the spoon theory before, but when I get so foggy it's hard to remember. I guess I hadn't thought in terms of how few spoons I have just now. I just don't WANT to need more, you know? I'm off to check out your link.

[Someonesmother in reply to Azabat]

I so know what you mean. I have discovered that we need to be kind to ourselves and I realise I have to stop trying to be the person I used to be in a body that cooperated and adapt to the body I have now. Frustrating and annoying at times and everyday is a new level of understanding about my capacity, but it is what I have now so I have to accept it. That includes that my family and others need to realise there are days that I just can't do anything.

[sylvi]

First off big hugs for you darling, Have tried writing down what is wrong with you and what you need them to to for you. Speak to you other half when your on your own( i am assuming you have another half) and tell them how you feel and what you need and see if they can help you out.xxxxx

[helixhelix]

Sometimes you just have to say it in words of one syllable! A couple of times when I reached a mini breaking point, and wailed at my OH, he then looks at me like a scolded puppy dog and says "well why didn't you just tell me?"

Or maybe a poem pinned on the bathroom mirror?

[norfolkjo]

I showed my family the spoon thery and we actually got spoons out with my youngest. .now two years on he will see me and ask if ive ran out of spoons

Its precious xx

[npkb]

Hi azabat

As one of the ancients with 40 yrs of RA I do feel for you. I think it must have been at least a decade from diagnosis before anyone, even my long suffering partner, believed there was anything wrong with me. You can't see pain, exhaustion, constant nausea from side effects of meds . . . I managed to keep up my usual chirpy cheerful front with friends and work colleagues, and for the most part my children, so my poor partner got the brunt of my moaning and misery!

Once the damage was done and people could see the joint deformities, were aware that I had numerous joint replacement ops, then at last they believed me! Ironically by that stage I had very little pain, meds/side effects causing minimal problems, and although still exhausted people understood why. Now I get if anything too much sympathy, with people running round and worrying about me . . . !!

You are NOT failing, you are NOT alone as all of us on this site are with you.

You must try to tell people, help them understand. Choose a moment, if possible, when you are not feeling tearful and at the end of your tether so you can explain clearly exactly what you are going through, that you don't want sympathy, you don't want to moan, you just need a little help and understanding.

I think in the early days if my partner had just put an arm round me and said "it's ok, I'm here to help, I understand" it would have made a world of difference (and stopped my constant complaining which was really just a cry for help.)

(He is still with me, he is my rock, he now understands totally - it was a huge learning curve for him too and has changed his life as much as mine. We are now proud grandparents, and yes, physically I'm a bit of a mess, but hey - I'm still here and am so lucky in so many ways!)

(NB My RA is "severe" - most people will not end up nearly as badly affected - and back in the day the treatments available were not as effective as they are now)

I wish you all the best - things will get better.

[Azabat in reply to npkb]

Thanks so much. I think I do cheerful and chirpy a little too much myself (I call it my happy-Mary armour). I'm so relieved to be able to come here and and shed it. One of my core beliefs is that every event in my life has a purpose, and that it's my job to find it. So far it's done pretty well for me.

I showed my partner the post, and he said 'we just need to make a plan for you', so then I carefully explained that I can't be part of the 'we' doing the planning right now. He told me, too, that I'm not failing, that he wants to help. Then he made coffee. I think I'll keep him. I'm lucky, too.

Thanks again,

Bat

[farm123]

Like others have said it is a huge learning curve for our families as well as ourselves and we probably do not ask for help until we feel swamped then it come out in a negative often hurtful way towards them. What you see on the outside is not how we feel on the inside and that is so hard for others to understand as so much of this disease is 'hidden'. My OH who has been with me for over half of my RD journey is very good at 'reading' me when he comes in but has found it very difficult since my knee replacement as the family are used to me doing certain things even though it might take all day and currently being on crutches and only partial weight bearing has changed what I can do.

I find it very difficult when the disease is not under control to look after myself yet alone anyone else and unfortunately it can take some time and changes of medication to find the right one to suit you. Farm

[Sailaway]

I've found this is one of the big changes that came along with diagnosis and dealing with this disease. How it resolves is personal to you and your loved ones, but here a few of my thoughts:

From my experience I found I had to start talking about how I feel, all the time, which was opposite to what I wanted to do, and a bit annoying for everyone else. I'd become very silent about it but that meant everyone thought I was ok and just a bit stiff. Talking (not moaning) about the reality did help us all, though.

Before I knew about 'spoons' I talked about waking up with a limited number of credits for the day, and once they were used that was it (so a shower would use up a lot, and limited what else I could manage in a day). My husband asks how many credits I have left, or how many have I woken up with and it helps him plan the day.

RA Warrior (rawarrior.com) has articles for those who know someone with RD, rawarrior.com/rheumatoid-ar... is a good starting point - maybe this is something you could point people towards?

On a similar note, the NRAS site and helpline is for your friends and family as well as you.

All the best.

[Hidden]

Like everyone who has responded here I have great sympathy with what you are going through Bat. My hubby made a joke earlier about these people who lay themselves bare on Facebook and talk about their partners with broken legs or flu and it's all "so gushy and embarrassing"!

He went on by suggesting facetiously that he could write on his FB page (which he never goes near) that we had a big row last night because my gallstones were playing up and I was feeling lousy so he had to sleep in the spare room. I didn't bother telling him that I don't need Facebook for that sort of thing because I can come here where people generally understand. I don't think he would approve!

I think I bored my friends a bit on the subject of RA when newly diagnosed so I try not to say much about it now - although ironically it's been much worse over the last few years in many ways because of drug intolerances. Lately they have been more sympathetic because my OA has been so bad that my bum locks after sitting so I am visibly struggling with poor mobility.

I can moan to my husband and sons a bit about these and strangely they understand this better than they do the disease itself. But with friends I can't moan about drugs because many are then apt to start on about manuka honey and cider vinegar so the price is too high!

I do think the Spoon theory helps to an extent but I've tried it a couple of times on people including my family but they just hate hearing about the fatigue and unwellness side of things becauase it makes me seem like a sick person and they are determined that I'm not! But privately I plan my days and nights in spoons and my mental diary is in the cutlery drawer these days! x

[Azabat]

I've run out of steam but I want to reply in greater detail. xx

[petalnumber2]

Hello Azabat and all,

Do you know, it really is a comfort to know I'm not alone with my fuzzy head and the dreary exhaustion problem. I've noted the "spoon theory" and shall take a peek at it after I finish writing this reply. I wouldn't wish it on my worst enemy !!

I have just managed to get some help and support in for my husband who is wheelchair bound and on dialysis, and I am his carer. On the whole I manage quite well, but when the dreaded overwhelming fatigue strikes I'm really floundering. It has taken quite a fight to get help because the social services haven't got a strategy for one disabled person looking after another.

Anyway, I'm straying from the subject of "how can we tell our dearly beloveds that we are feeling low, tired and in pain and need help ! I agree with everyone who finds it difficult to get the message over, and I bet I'm not alone in my feelings that I don't WANT to keep explaining why I'm so forgetful and my concentration is in bits. So I'm hoping that the "spoon theory" turns out to be useful. Take care Azabat and all. June xx