I'm tired of being tired, feeling useless, feeling a burden on my other half. I feel like finding a place where I can just do nothing and not feel bad about it. Sorry it's just a bad day. I know you are all struggling but I feel I need to be able to express my feelings today. I'm on 9mg of Pred - the dread from 75mg. I feel like I've been on this road for too long!
My tank is empty!: I'm tired of being tired... - PMRGCAuk
My tank is empty!
Written by
GCAVictim
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68 Replies
•
PMRproAmbassador
Everyone needs that place - you definitely aren't on your own there.
When you married didn't you have the "sickness and health" and "for better for worse" clauses? If he were ill - would you feel he was a burden? (And it is OK to say yes to that). You would look after him too to the best of your ability - that's what we do. But we do also need to vent about it - so no deciding you shouldn't have said it.
DorsetLadyPMRGCAuk volunteer
Not sure how long you have had GCA, but as you only been on the forum a few months, ….I’m guessing maybe not that long….so could be that you’ve reduced much too quickly. That will make you feel rubbish!
As most of us have discovered you need to be on the correct dose to give you a decent quality of life….a bit more info regarding your treatment etc might help us to give you more detailed response.
Seconded. The right dose makes all the difference. The magic of the pred helps to reveal the magic of your own body and of the world around.
You aren’t alone in having a day like this. I am sure we can all relate to it. Maybe change your Avatar from GCAVictim to GCASurvivor. After all that is what you are doing, surviving a horrible illness and you will get better. You survived 75 mgs of Pred - wow!Take time away from the road and smell the roses. Sending you a hug!
Hello there. I'm so sorry you're feeling really despondent and low at the moment. It's a feeling most of us have experienced at some point during this life-changing disease but it can become extremely challenging when it gradually begins to gnaw away at your strength & determination until it begins to wear you down. This is when it can become easy for our perception of things to become distorted and we begin to convince ourselves of many things that simply aren't true.
I have often felt I was holding my husband back from enjoying himself and living his fullest life....simply because if we go for a walk, I can't walk as far or as fast. If we go out anywhere I can't stay out late. I can't stand for long periods and can't travel long distances that would involve flights, hopping on and off trains or tubes or anything that would obviously sap my energy levels. He says it's ok... repeatedly!! SO!... the sensible (and only) thing to do is, BELIEVE HIM!!
People who genuinely care about us will of course have a transition to make themselves when helping us with our condition and it's limitations, but they will do it nevertheless because they love us! Life doesn't always seem fair or reasonable, but we have to live with the cards life deals us and if we can at least try to do that with grace and humility we'll manage acceptance far quicker.
It's ok to have bad days and perfectly normal to have bad days. It's one of the ways we cope with everything. Just let yourself have that 'bad day' and then try to begin the next day knowing things will improve.
Unfortunately fatigue, tiredness and not feeling able to do anything, is all part of PMR/GCA. It's hard to take the rest we constantly need but so very important that we do.....and without feeling guilty! It is a long road unfortunately, and one well-trodden by many before, but it's not an impossible road and the hope is there, that for many of us, this condition will burn itself out and we'll go into remission. So hang on in there. There's still lots to be grateful for.
This trustworthy site and the knowledgeable people on it will guide you through as they are doing with me!
Thank you for your reply, just to know you understand how Im feeling means a lot. I have tried so hard to keep up and always paid the price, somehow I have taken a dive and feel this journey will just go on and on and on. I feel worn out mentally and physically. This is not me but I will be back!
I truly know that feeling. People think cos you often look ok that you should be ok! That in itself puts pressure on you to be ok. I think all of us here have tried that one...and experienced the consequences! Once you can accept your new limitations and realise things will improve it's a much easier road. Your life has changed but it hasn't stopped. Sending a hug.
You WILL be back and hopefully that will happen sooner if you stop beating yourself up and do only what your body is capable of. I mean this kindly: it's not a criticism by any means. I've felt I've needed to apologise to my husband in the past but realised that acceptance is a big part of improving. Acceptance in this context is not giving up, it's more concerned with treating your illness with respect and adjusting to its demands. Rest whenever you need to- even if it's straight after breakfast, eat healthily, try to get outside whenever you feel up to it and really look at and appreciate what's around you: it's good for the soul, your health and your mind. I really do wish you well and hope the place you find yourself in now will soon be a thing of the past. 💐
• in reply toKendrew
Wise words well put!
You are by no means alone in your thinking. I wasnt on nearly as high a dose of pred as you. Thats quite a journey. Its just that our heads can't make our body feel the way we want to. The fatigue can be just overwhelming!! Dont feel bad, we know how you feel.
Hi, Please don’t feel terrible, if it’s any consolation I’m permanently tired, it drives me up the wall too. I’ve never felt like this before, I think we all get down about this condition, it seems to affect the very active people like us, so when it strikes it knocks us for six.
Take it easy, you will get good days, just enjoy them when they happen.
Sending you a big hug 😍
Xx
We would all agree that we all get dayd when we feel down, fed up etc I do quite often. I think my trouble is I don't like to ask for help or say how I'm really feeling cause i dont want to be a burden to anyone, like today after my shower it took me 23 mins to do my bra up and that was just 1 hook then felt useless so cried myself to sleep for few hrs, so we all know how you feel and the need to have a rant and get it off yr chest.
Lots of hugs x
Constance13• in reply to
I haven't used a bra for 40 years - I always hated them. I use a vest with bra part - very soft. Do you not do them up in the front and then twist it round?
• in reply toConstance13
Anyway that possible sometimes it done up then pulled over my head, st front then twist or at back depending which way is easier on that day
• in reply to
Shops and websites currently packed with easier options than hooks. I know the sports ones are too tough to wriggle into but moulded crop bra tops and camisoles are great and I can step into them and pull up over hips as I can’t use my shoulders much due to RA
• in reply to
I bought all new ones few months ago bigger size back, front fastening, sport bra just cant seem to find an easy one
Try front fastening bras, I started to use them when my arthritic shoulders made things too difficult.
Trulyscrumpious• in reply to
I use the magic bra, which does up at the front. Just google magic bra. Before l had a new shoulder l hadn’t used a bra for ages and got quite used to it. Most of my clothes are loose fitting lt removes one source of stress and frustration.
ChrisinNam• in reply to
Been there, done that!
Can you manage to do it by fastening the bra at the front and then twising the bra round to its correct position?
That’s how I always put my bra on. No struggle that way.
jayemmemm• in reply to
As a mere male, I have no direct experience of the difficulties associated with bra fastening.However, my late wife broke her arm once so I saw the problems she had. To cheer her up I wrote the following limerick :
When my wife Anne broke her humerus
Her problems were painful and numerus
A maternity bra
Proved better by far
But she needed a hand with her blumerus
I’m told that to humour your wife
Helps ease the tough stuff in your life
I’ve found this is true
But it’s so hard to do
‘midst the troubles and woes that are rife
ditto all the above, If you read some of my recent posts they mirror your feelings. Went to a wedding reception Saturday and everyone said how well I looked. Didn't feel it though. Left early. That's a high dose to reduce from. I have GCA and PMR but only on 40 and no reduction yet. This forum is stacked with knowledgeable people who will help you through.
You have hit a chord there. I have to bite my tongue when people tell me how good I look.
Of course, they mean well but don't understand
Hello all you lovely people. It has helped me so much to read all the replies to CVA Victim. The post really resonated with me as I got up this morning feeling just like that. I could have written it myself. My husband does so much for me. I am 81 and we have only been married 5 years and it’s not how we planned our second marriage, gone are the holidays, trips to visit friends etc etc, but we are so happy to be together and even if the event of the day is the daily crossword, that’s ok! So hang in there and be glad for the good things. Hugs and happiness to all. Liz
• in reply tosewingscissors
How wonderful to be a newlywed in your mature years. I wish you every joy 🥰
sewingscissors• in reply to
Thank you for your lovely reply. It was funny when we arrived at our honeymoon hotel, where the travel agent had told them we were newly weds. You could see the receptionist was thinking that they would have to remove the champagne etc, we couldn’t possibly be on our honeymoon! But when we reassured them, they were lovely! Thinking of you. All the best. Liz
The sun is trying to shine, another day. Just take it easy, don't be cruel on yourself. We've all been there, good days and not so. The days you can do that little bit more are a bonus. The others well let's move on from them. Rest and do what you can. Tomorrow's another day. Together we all get there.
Here’s some tough love / has your other half said you are a burden ….. assuming not, then you are not so don’t become one by feeling the VICTIM. Be the survivor it will change your outlook I promise you. Tough love well meant 🤗
Im going through exactly the same thing atm ! Been having chats with these fantastic kind people on and off all weekend ! Its awful and sometimes it does you good to feel like this . I have had to cancel a week away ,my niece won a Bronze medal in the Olyimpics . There was a big family party being thrown for her and other family things going on through the week.Because of this awful fatigue i stayed at home, even the thought of the train journey i could not face ! But forced my husband to go as he was so excited. I made it through our daughters wedding a few weeks back and am still suffering for it. So yes i feel for you, Fingers crossed the lower we go on Pred etc, the better we are going to feel. Chin up on we go ! Best wishes Viv
Hi Viv. Could you have increased your pred for a week to get you through the train journey and party? Is that cheating? I’m not sure but it’s worth a thought.
We do sometimes recommend that for a one-off event…..just so long as it isn’t used too often.
I had a meltdown yesterday over same stuff. I hate feeling like I’m stealing their life too. I’m fairly new to pmr still don’t understand itTrying to work out why my body hate me 😂😩 I have other issues Health wise too so life feels like a roller coaster. The whole thing scares me the loss of control. BUT I carryon trying to stay upbeat I thank my husband for his support and can only do day by day at moment. Hang on in there. I know someone who’s had GCA for a good few years mostly leading normal life. 😘
Last week I felt exactly the same, I live alone and whilst I have lots of friends I see them getting on with their lives and find it really hard that what I can do with them is limited. I listen to them telling me about the 4 hour walk they did or the decorating etc, if only they knew how that makes me feel. This forum keeps me going as you all understand how it really is for us and I don’t feel so alone. The good days are usually really good. Hang in there. Sending hugs 🌸
What an inspiration this site is!! Just to read that what I experience is normal and the support from people who understand ....Indescribable!!!
Bad day too! Overdid trip to garden centre yesterday and planting up a pot afterwards... something that that would seem like nothing in the past. I'm down to 7mg Pred with PMR and feeling dizzy/wobbly in the mornings (adrenals sulking). Just had X-ray back showing I need a hip replacement and the mobility problems plus the weakness in my muscles have cut me off from the little walks and activities that I have managed up until a few months ago. It's difficult to feel positive when you are physically low - somehow I must strengthen my muscles to prepare for an op which will take place in the distant future as lists are enormous here in the UK. Don't want an op anyway when I'm feeling like this. Shower now, and a quiet sit... not the person I was 3 years ago but this forum lets me know that there is an end to it.
Reading all these positive comments and how courageous everyone is makes me feel quite humble and puts things in perspective. I feel lucky to have reduced to 1mg and am keeping my fingers crossed although having done a six mile walk yesterday felt absolutely shattered. I really admire how people far worse than me are coping and send my best wishes to you all.
I am so sorry you are feeling like this. I remember it so well. About eight months ago I experienced a severe flare. The fatigue was terrible. All I wanted to do was lie in bed. I felt guilty and would force myself to get my husbands lunch. He is supportive but didn’t understand why I didn’t get dressed and rest downstairs but I am much more comfortable in bed. I started to think seriously of separating so he could find someone else and have a good life. Silly really, I know he loves me. Now I am so much better, after about four months on 30 mg the fatigue started to lift. I still have pain but can cope with that much better. We went out for the day last week so he could do photography and had a pub lunch. We are even booked for a weekend in the Cotswolds and if I have to spend the morning in bed at the hotel I will. Stick with it and forgive yourself. It will get better.
Know just how you feel. I feel completely useless these days and having to stay inmost of the time majes it worse
A couple of people have mentioned this and I want to seriously suggest you change your avatar. Our situation is hard enough and surely it can't help to label yourself a victim ? The suggestion may seem trivial, but it really isn't. You will improve. All the best.
A victim to the disease is how I felt when I was taking 75mg Pred, I had like many others that I had been attacked with a multitude of horrendous side effects. I don't feel the need to change my Avatar, I was feeling very low yesterday, I have had some very helpful replies. I thank those of you who responded with kindness and support, it meant a lot to me. Today has been a better day which confirms there are days when you feel you have reached your worst point, just hang in there and there will be better days!!😍💞
So sorry to hear you're feeling so low.Your post and all the replies truly resonate with me. Having been a strong independent woman for most of my life, feeling suddenly exhausted, severely limiting physical activity and needing to ask for support from my nearest and dearest is extremely difficult.
I take great comfort hearing from others who have felt the same at sometime during their journey but have managed to overcome or at least come to terms with limitations.
Its a struggle but we will get through this.
Further to what Dorsetlady and Selfbuilder said above, if you have come down from 75mg to 9 since March that is amazing. Well done! But perhaps you could consider whether this has been too fast? My personal experience was that I came down 2.5mg a week on the advice of a consultant and then started having what I thought were flares but probably were mainly too fast pred withdrawal. I got a new, good consultant and am now on a slower taper of 2.5 a month. But at 15 and 12.5 I spent the first 8-9 days of each month feeling ill, fluey and useless, then it cleared and I felt quite good for the rest of the month. A few days into 10mg I have not had any bad withdrawal - yet... We are all very different and it helps to look at all the angles.
Also agree about changing your moniker to something positive or neutral.
Love and positive thoughts to you. X
Thank you for your reply to my post. I was diagnosed with GCA October1920 not March.I have had one setback going from 15mg to 10mg, my GP told me to go back to 15mg for one month then reduce every to weeks by 1mg. It had worked so far. I hope your journey off Pred will be successful. Take care. X💞
Interesting approach - 1mg x 2 weeks rather than 2.5mg x 4 weeks. Great that it's working. X
Why?
Interesting because it seems like it may, potentially at least for some people, be a gentler way of doing things in terms of pred withdrawal. Going down by 2.5mg in one swoop is more than 10 per cent of the total pred dose when you get below 25mg. It was just me musing about possible alternatives. I didn't mean to offend you. Sorry that I did. X
1920????
The last two replies have made me feel the need to come off this group. I feel they are wanting to prove some sort of point. I do t need this, I have enough to contend with apart from having GCA!
Nobody is trying to prove anything. We are trying to help and just querying your treatment to date - because that may have resulted in you feeling so unwell. You obviously are in a bad place at the moment and need help - please stick with us.
Sorry I'm feeling overly sensitive at the minute. I think some comments mentioned I should change my title GCA Victim and I felt this was my choice and nothing to do with anyone else. It went downhill with those comments. I have actually tried to do this before but have not been successful - a sore point!
Okay…….it’s very difficult when you are feeling so low to be rational about things, and it’s easy to take exception to what others say, when on another day you wouldn’t bat an eye - that’s not a criticism of you believe me, just an observation.
Plus as we get on with our lives and our illnesses are chugging along okay, we are apt to forget what it was like on bad days (and we all have them)…..no one is intentionally being nasty or cruel, but the written word doesn’t always come across as the spoken one would……with a smile and a hug.
I do hope you feel better soon, but as I said in first post I do worry you may be on too low a dose.
This disease is really tough on us. We are used to managing our lives and this takes that away. It made me muse on that word MANAGING.
Sounds simple doesn’t it. It’s usually what we say when people ask us how we are or how’s it going. A simple little pass it off word which encompasses so much more if you stop and consider. Managing what? How? Health, finances, relationships, state of mind, affiliations, family, all are pertinent and all affect the way you feel and therefore manage your life. Do we actually manage or are we just bumbling along trying to cope from one situation to another. That’s the real question. I suppose that’s what we really mean when we say managing. To manage you need to be in control of whatever it is you are trying to manage and how many of us are able to assert we are in control. If in employment then job security and income are not yours to control. All you can do is try and fulfil your contract in a way that makes your services wanted by the employer. There’s no control or certainty. Self employed and company owners are more in control but still subject to the need to win work and therefore please others. Health you would think is controllable if you exercise, eat well, don’t abuse your body with harmful substances or activities. Think again. Virus’ and bacteria are capable of throwing your system into meltdown however you take care of yourself. They will take control of your health not you and you will have to adjust to them. Relationships are so easy to mess up even if you are the most tactful and diplomatic person alive. It only takes one thing to upset another persons’ balance and however well meaning your approach it can spark a disagreement. The better your relationship the more chance of correction, but it’s not control. State of mind is influenced by everything happening in your world view, whether it’s the state of national and world politics, global warming, the pandemic, someone’s health, your finances, whatever comes to mind it affects you and how you feel. It is not controllable. Affiliations like clubs, groups, institutions to which you belong or relate to are like relationships and not subject to being controlled save that they operate by rules that you devise and can adjust with the cooperation of others. More controllable but not wholly by you. Families are most certainly beyond control. Anyone who thinks otherwise is delusional.
We manage at the next level down when a situation presents itself and we devise strategies for coping with whatever has occurred. Sometimes we anticipate them and can react to the event which comes close to control but it’s usually reactive rather than proactive as a rule. The less you are able to influence events to manage any situation the more likely that situation to cause you stress. Unavoidable events have to be addressed and how you approach them determines the level of stress to which you are exposed. I divide stress into two categories of resolvable and unresolvable. Sounds simple and is in essence. However it depends on how you choose to view and therefore react to the event. You need to get rid of any situation where stress is unresolvable. This is the dangerous state and eventually leads to physical and mental breakdown. If you can’t find any way to ameliorate the situation you need to cut free . It’s outside your control. Resolvable stress can be productive as long as it isn’t too prolonged.
You are a victim of this disease but it can be resolved in time . Stay on here. these people only want to help.
Thank you for this I really appreciate it. 💞Xx
Hi, how are you feeling today? 🤗
GCAVictim• in reply to
Thank you for asking, I have brain fog today and feel very tired which most of us have to endure. I have just read the post from Cycli which has helped me to understand how GCA is affecting me. The support I have here is so important, especially when I feel I've had enough and want to give in. I feel selfish for saying this as I know there are many in this group are worse off then me.This is not a two week illness where you get up and get on with your life, even if your other half has supported you in many ways. The guilt you feel is upsetting, then you pick up on their frustration that you just can't do things together like we used to, we know each other too well. This is where I feel so useless and need to just get on with this disease without feeling guilt and anxiety which is making me feel so low.
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