Guilty

[nellysgran]

Hi, does anyone else feel guilty when they have a day when all their get up and go has gone ! and all i want to do is cry for no apparent reason. ?

[springcross]

Hi nellysgran. All my get up and go got up and went a couple of years ago, I feel like that most days but I don't get tearful with it and I'm sorry to hear that you do. I hope you feel better soon. xx

[Boxerlady]

I haven't had this with RA but I had it with peri-menopause and prior to that with IBS.

I occasionally have days when I feel wiped out but don't feel tearful; now that my RA is well controlled, it's usually after a particularly busy day so I try to schedule a quiet day to allow myself to recover.

I don't feel guilty these days, I just try to accept it and let it flow over me as experience tells me that I'll recover more quickly that way. When I had an IBS flare I came to realise that it fed my anxiety/low mood which in turn exacerbated my IBS so I had to take care not to get stuck in a viscous circle - easier said than done!

Hope you feel better soon 💐

[Ruth12345]

In a word, yes. I have realised prednisolone affects me and it like hormone tears and low mood. Could it be anything to do with your meds.I feel for you. It does pass, it's just when and for how long.

Dont suffer in silence tho.

I wish you all the best. 🌷🌷

[Hidden]

Yes🥺

[Hidden]

I don’t do guilt. But I do understand what you mean. I liken it to a small child who is beside themselves and don’t know what to do because they are too tired, so they cry. Don’t put yourself under so much pressure. You are the one who writes your ‘to do’ list…..

[Mmrr]

Maybe not so much guilt as just feeling so sorry for people around me when I have a very fatigued day like yesterday. I had a visitor and just could not stop yawning, those big heavy eye watering yawns, the fatigue was crippling. I just wanted to sleep. I kept apologising for yawning, what do you do ? I slept for 9 hrs 40 minutes last night and feel a whole lot better today.

It's such a shame and must be so off putting for visitors.

[Deeb1764 in reply to Mmrr]

Its funny hubby said yesterday how I dont yawn when my fatigue is bad apparently I just zone out! However reading your post I then yawned which made me chuckle!

[Madmusiclover in reply to Deeb1764]

Zone out. Perfectly put. I only yawn when I’m tired. Normal tired.

[Justanothermama in reply to Madmusiclover]

Zoned out— indeed! Yesterday I couldn’t name a marshmallow, just called them the puffy things. 🤦‍♀️

[Mmrr in reply to Deeb1764]

I zone out too, can't think straight, heavy arms and legs and yawn, and yawn and yawn

[Madmusiclover]

I cry quite a lot on fatigue days. Such days don’t always correspond to high level disease activity either. Don’t feel guilty. It’s just our disease talking to us. Annoying it’s not visible when it comes to explaining it to ourselves and others, but I’ve learned to accept it. Be kind to yourself, as I’m sure you would tell someone else in your position.

[Deeb1764 in reply to Madmusiclover]

I do like this reply ( It’s just our disease talking to us. Annoying it’s not visible when it comes to explaining it to ourselves and others) sums up a lot for me at the moment. Feel like I am on verge of tears every day at the moment!

[Madmusiclover in reply to Deeb1764]

Aw sweetheart. Things will get better. The NRAS helpline is there for you if you need to get it all out.

[Deeb1764 in reply to Madmusiclover]

I am ok mentally in many ways just have this overwhelming moments of wanting to cry but then even some adverts even make me do that or the state of tv now!

[nellysgran]

Thank you all, i know now i shouldnt feel guilty, just sometimes this disease gets you down and i know i will feel better tomorrow 😀.

[ElizabethW]

Don't feel guilty about it. Sometimes you need to give yourself a day of rest to recharge. I think the fact that you feel like crying is a good indication that you need to take a break and take care of yourself.

[Lolabridge]

No I don’t feel guilty, just sad that RA has robbed me of the retirement I had saved for and planned. ☹️

[Mmrr in reply to Lolabridge]

Yup 😥

[Gladders in reply to Lolabridge]

Same here .....

[66ra]

don<t feel guilty its just part of our RA having ahorrible day today .I have a wonderful husbanf who understands .and re another post he does my bra up for me !!lity

[Wobbies]

Yes, I am having one today. Good job I had to get up for the dog or I might not have done. xx

[Sheila_G]

Yes, yes and yes but thankfully they are shortlived in my case.

[ABwn]

I do - fortunately not too often. Take care

[Brushwork]

Most of us with RA/RD get days like that, though not necessarily with the tears and guilt. It is not you, you are not doing anything wrong, it is your disease that is causing it. Acceptance is the key really. You can't fight every symptom thrown at you by RD and even when the RD is controlled, you still get days that are not so good.

My view is to enjoy busy days when I can but also to enjoy quiet ones too. Have things to do that require little energy, make those days enjoyable. We only have one life, we need to make the most of every day.

Do not beat yourself up because your RD is doing enough of that. Much better to be kind to yourself.

Go gently

[Greencat96]

Hi Nellysgran,

Yes this sounds very familiar to me. I think having a chronique disease has some similarity with a bereavement process. We have lost the future we thought we would have, we are not going to grow old as we had consciously (or not) imagined. First come anger and revolt, then deep sorrow and, little by little, with time, a degree of acceptance.

It is not a pleasant process but it is to be expected and, if understood, does provide an amount of relief. It's normal, I am normal, you are normal. It's frankly crap but something that will eventually diminish. It won't last forever; there is some comfort in knowing this.

I am 47 years old and female so when feeling tearful, I think it has been perhaps a mixture of processing the illness, some treatment side effect (sulfasalazine can cause this; and after discussing it with my Rheumy nurse we decided I should stop) and the peri-menopause.

Impossible to pin point the exact cause but knowing that it is not abnormal and there are plenty of reasons that are completely beyond my control for me to be tearful at odd times does bring some peace and relief.

We are all in this together Nellysgran, sharing and finding warmth within a community of people is healing and super helpful.

So I am sending lots of wave of warmth, empathy and courage.

Hang in there, it won't be forever. Life goes up and down; there is nothing we can do about this and therefore no reason to feel guilty (easy to say....hard to do!!)

Hugs rushing your wayxx

[stbernhard]

It's part of living with RA. Fatigue, pain, stress all play their part. I am a person with a very positive attitude, but there are times where I get very emotional. I allow myself a little cry if it comes on me without feeling guilty and I always feel better for it. In other words it is normal to feel like you do and there is absolutely no need to feel guilty!💖

[StormySeas]

Yes! Not so often now, since at last - after a large number of years - my RA is better controlled. But at my lowest ebb I felt like this a lot.

I'm not sure I felt guilty, as I barely had enough energy for that, but I had no get up and go and all I wanted to do was curl up and be left alone.

It's easy to say 'be gentle with yourself' but when you feel like this I think you have to be. It will pass, it's important to remind yourself that even though you can hardly believe it.

Hope you manage to have your cry - we have every reason - and hope you feel better soon X

[LinaM]

Yes …😩I am very lucky to have an understanding family and have dropped “ friends” who make me feel bad about it. But I still hark back to the time when I could depend on being bouncy and energetic every day ( as that is the REAL me ) sending you a virtual hug … I find being kind and gentle with myself on those days makes them go away faster xx

[Tkat10]

Those days are what I call my lost days. Try to do something that you would not normally fit in that is relaxing, mindful and beneficial to you at that point in time. A bit of luxury when you feel like this can really lift the spirits and make it easier to get back on the path to a normal day sometime soon. Remember not all luxuries are expensive and some can be just making time to read, phone/FaceTime someone who you haven’t caught up with for a while. Remember be kind to yourself most of all, life is hard enough without carrying the issues related to a chronic illness too. Xxx

[Ritaritis]

Hi nellysgran, nice moggie. Some days I struggle to get out of of bed and do anything, . struggle with mobility and pain some days even with meds and painkillers. I shout, cry and wonder if God exists, (not too me) then try to calm down. Shouting and crying does seem to release the tension. Having 2 moggies that need constant grooming helps. Don't feel guilty, not for a single minute. Arthritis is a horrible disease that can adversely affect lives, we have to let go of our anger in our own way and find ways of coping. Good luck, 🦄🐈

[Ms-D]

YES!! I've had a lot of those days lately and its bad when friends don't understand why you aren't in the mood to meet up

[Justanothermama]

Yes, and I’ve been feeling very much that way for several months, and I feel guilty particularly because I know it leaves a lot of responsibility to my family. But I have absolutely no energy and am in pain, despite pain meds. Even the idea of showering is overwhelming and exhausting. It’s been quite awful. I’m sorry you’re feeling this way too. But I also know this will pass and I hang on for the good days that I can be more like me. Hugs to all of you and yank you all for sharing, it’s brought me comfort.

[Goldsky]

Yes know what you mean. Some days I feel as if I am climbing Mount Everest with no crampons😏

[Stowe]

Yes that seems to happen frequently for me at the moment ☹ I hope your taking it easy and feel better soon. X