A day in the life of someone with RA: This was written... - NRAS

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A day in the life of someone with RA

sylvi profile image
21 Replies

This was written by someone on another site i am on and i have her permission to share it and i thought you would all like it.xxx

A day in the life of a person with RD.

Imagine waking up one day with extreme fatigue that you just can’t shake. Now I’m not just talking about being tired. No, this is more. Imagine how you would feel if you’ve been up partying all night with no sleep mixed and a long-lasting hangover from hell. Now imagine doing this for a whole week nonstop, and you’re left with the feeling of how you wake up when you have RA. Only you haven’t had the joys of a night out.

You roll over to your side, trying to get up in the most comfortable position without putting your already aching body in too much more pain. As you put your feet on the ground, you brace yourself for the day ahead. You know it’s going to be a tough one as you wake up feeling like you haven’t slept. You’re in an intense amount of pain already. It’s your feet and hands that have been giving you the most trouble lately. You curse yourself for the days when you took your healthy body for granted. You wish you could go back to being pain free.

As you limp to the kitchen, you try and get your “normal” walk on since you don’t want to alarm others.

Every single step and movement you take is a struggle. You feel stiff and wish the constant sharp, stabbing pain would go away. but you know you’ll be lucky if it disappears before midday. RA is always worse in the morning. It’s especially hard to complete your simple morning tasks you once did so quick and easily.

You pick up the jug to fill it to make a cup of tea, but your hands are so sore you can’t lift the half-filed jug. You opt for a glass of water instead and wonder whether it was that little bit of extra walking you did yesterday that’s making you feel even worse today.

You’re not particularly hungry. In fact, you are feeling rather nauseous. You realize it’s probably the new medication you started on that’s making you feel so ill. You curse your body for not cooperating with the other four medications you have already tried but failed on. There’s a long list of side effects to this new medication, but you’re hopeful this will be the one that finally works. You know there is no miracle drug for this type of disease, but that doesn’t stop you from wishing for one.

Because you are in so much pain, things are taking longer than you thought they would. Having the curly (frizzy) hair that you do, it’s crucial to wet it before leaving the house unless you want to run the risk of looking like Sideshow Bob from “The Simpsons.” You usually have a shower in the morning to do this, but you’re off to a rather slow start as it is and knowing that with the amount of pain you’re in it’s not going to happen this morning.

You struggle to get undressed without aggravating your already sore body. You can barely lift your arms above your head since your shoulders are in so much pain. You opt for a button-up shirt so you don’t have to raise your arms again. Luckily your fingers aren’t too sore today so you can do up the buttons.

You know driving today is going to be extra hard. Your wrists have a mind of their own and decide it’s a good idea to ache today. This means steering and changing gear is going to be very painful.

As you wait at the doctor’s office, you see some kids coughing and spluttering and pray they don’t come near you. You usually love kids, but your immune system is already low and you can’t risk picking up another infection. They remind you of your younger cousins, and you feel guilty for not having the energy to play with them like you used to.

It’s off to get some more blood tests done. You just about know everybody at the lab by name, and all the receptionists know how to pronounce your name correctly. That’s one advantage of being a regular at the clinics I suppose.

You plan to meet up with friends for lunch and a walk. But after this morning, you’ve decided you’re going to have to reschedule. You feel guilty for cancelling on what seems about the hundredth time. But you know there’s no way in hell you’re going to be able to last the afternoon without a rest. You are slowly learning to listen to your body and accept what it’s telling you, but it’s certainly not easy. It never seems to get any easier telling your friends that you can’t come. You try explain to them how you’re feeling and why you can’t come, but you’re always anxious they won’t understand.

It’s home to bed for a rest. You set your alarm for late afternoon so you can get up and do some jobs. But you’re so tired you don’t hear your alarm go off and next thing you know it’s dinner time and you’ve just woken up. You still feel like absolute crap. That new medication is really knocking you around. You feel dizzy, nauseous and still extremely tired despite the big sleep you’ve just had. Your body is still so sore, and you wonder for the millionth time that day if things will ever get better.

You’re tired of not being able to do the things you once took for granted. You’re tired of nobody understanding. You’re tired of rheumatoid arthritis consuming you.

Is there no end to this crippling disease? You pray that things will be better tomorrow.

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sylvi profile image
sylvi
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21 Replies
Moomin8 profile image
Moomin8

Thank you for sharing x

popsmith1874 profile image
popsmith1874

Hi Sylvi thank you for sharing it sums up this disease totally , if only a lot off the public knew if they did they would know what a lot off RA sufferers have to go through on a daily business with having a disease they didn't ask for, hope your a bit better today xxx

Nickijk73 profile image
Nickijk73

Couldn't have said it any better myself - 100% agree with how that fellow sufferer feels,and just hope they find the right medication for them soon.

AgedCrone profile image
AgedCrone

That's it in a few words isn't It?

helixhelix profile image
helixhelix

Yes, it's a rubbish disease! Reminds me how I used to be every day, so hope this person finds a way to control the disease better soon.

Pat9442 profile image
Pat9442

Oh how true all of this is!

Caza profile image
Caza

This made me shed a tear, so much of it rang true for me. The last time I visited my hairdresser, I told her my hair just wasn't hanging right & she said, I know exactly what your doing, your washing it wrapping it in a towel & getting on with jobs breakfast etc...she was right about the towel but of course she wasn't to know that I can't hold a hairdryer or a brush in the morning 😞 as for doing jobs first thing forget it even putting the kettle on is an effort.

Thanks for sharing sylvi

sylvi profile image
sylvi in reply toCaza

I am struggling to hold a hairdryer and thats why i have had it permed so i can wash and leave it.It rang very true for me as well.xxxx

Caza profile image
Caza

Well at least I can hold it later on in the morning & I know that you & lots of you guys on here have it way worse than me so I shouldn't complain. Just feeling a bit sorry for myself today, not like me at all. I've had a cold for 5 weeks now & just feel I've got enough going on without a continuous bloody cold as well 😠

sylvi profile image
sylvi in reply toCaza

Caza darling all our health issues are worse and we are al in the same boat and we feel ours is the worst and it is to us darling. Your not alone today in feeling sorry for ourselves with the weather the way it is sweetheart.xxxxx

13mary9 profile image
13mary9

I would like to bring this to my next rheumy app and hand it to them when they say well how are you and how long is the swelling lasting in mornings 😂

Oh wow!! Very well written. Thanks for sharing ;)

wishbone profile image
wishbone

Yep, I know that feeling.

Leonwp profile image
Leonwp

So much truth there

mary4444 profile image
mary4444

that really tugged at the heart strings i felt really emotional when i was reading it so true and so sad well put together xx

Whiskers64 profile image
Whiskers64

And I thought it was just me, Thank you.

Not much to say to that but "Yes I recognize that day...

linda-5502 profile image
linda-5502

I feel as if I was writing this what a disease.and you cannot have surgery to relieve it. However I see you mention frissy hair did you get this through RA. I have had dead straight hair all my life until 3 years ago when the left side of my hair went frissy at the moment my right side is still straight I hope it stays like this as.I hate the frissy side.

Sending you loads of hugs xxxx

Paulajolo profile image
Paulajolo

Oh how true. thank you for sharing. I have had an allergic reaction to most drugs and I am now scared of the next lot I will be given. I guess any is netter than the pain. but they all seem to give me Wipe Out or is it the RA? who knows.

Megs4 profile image
Megs4

Totally my typical day. Especially sleeping through the alarm past dinner time and yet unable to do without the sleep. Maybe add how I never seem to understand that that is the disease and I'm not just lazy and unfit. Also how after years of this, you are amazed at other people's strength because they lift a 7 kilo parcel with ease and you feel like it is 50 kilos. Can't pour from a full teapot without help. And I look completely normal. Robust in fact.

cyprusmum profile image
cyprusmum

Felt every sentence that person wrote! Do hope that there is some improvement soon. The fatigue description I totally get. Also the driving and feeling weak. I get told all the time that I'm 'bonny' looking but inside I'm like super mouse, going about my daily life. Size is not a reflection of strength.

I agree that short descriptive piece should be put in all arthritic publications to show the differences between RA and other arthritis for education purposes.

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