Why ????
theresa4
Member Posts: 696
I have spent the morning sleeping as my meds are making me so dopey I keep dropping off. What a waste of a day
Im so sick of this roundabout I wanna get off!
Im in pain cant walk cant stay awake for more than hour feel awful and so useless keep getting thrush due to all drugs as well as all the other side effects dont know if I want to carry on it feels like a waste of air..
I am starting the new drug at the hospital this week (if ear infection clearing fully) but saw the letter the consultant sent the GP stating its unlikely to work but as its free to NHS for 3 months might as well try it as I am out of options at present. So I am going to inject yet more poison with a consultant who has no faith in it working as its so similar to the 3 biologics I have already failed on, but the only one I can go on due to the parameters for trials. Cant wait ..........
sorry just need to vent today am seeing GP tomorrow will see what he says.
Theresa x
Im so sick of this roundabout I wanna get off!
Im in pain cant walk cant stay awake for more than hour feel awful and so useless keep getting thrush due to all drugs as well as all the other side effects dont know if I want to carry on it feels like a waste of air..
I am starting the new drug at the hospital this week (if ear infection clearing fully) but saw the letter the consultant sent the GP stating its unlikely to work but as its free to NHS for 3 months might as well try it as I am out of options at present. So I am going to inject yet more poison with a consultant who has no faith in it working as its so similar to the 3 biologics I have already failed on, but the only one I can go on due to the parameters for trials. Cant wait ..........
sorry just need to vent today am seeing GP tomorrow will see what he says.
Theresa x
There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx
Theresa xxx
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Comments
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I know how you feel. It is a rotten roundabout that we are on, the drugs sap your energy, the pain saps your energy, everything is energy sapping. You have another new chance on the horizon though, another opportunity to find something that works. You never know, this could be the one.
Don't allow the opinions of others to unduly influence you: no doctor fully understands how their patient's body works. Your doc has no idea whether this will work or not. Neither do you, until you try it. I am on my third anti TNF and it has been the most successful to date, in that I've lasted 11 months on it and a) it hasn't really stopped working yet (unlike infliximab which failed after 4 infusions and b) it hasn't tried to kill me (unlike enbrel).
Regarding the lethargy, it could be weather-related. Low pressure weather throws moulds into the air which cause all sorts of problems for people. I've been very dopey today too, hey-ho, that's today, perhaps tomorrow will be better. If it is, it is. If it isn't, it isn't. Don't beat yourself up about it - that takes energy you really don't have at the moment. Cosset yourself as much as you can, think of all those poor blighters who are chasing their tails at work, having a lousy Monday. Listen to your body and do what it wants. Snooze the day away if needs be. You'll get better quicker. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Am glad I'm not the only one who has these bad days of feeling like getting off..................
This thing takes over your life bit by bit, it turns happy, carefree people into people we no longer recognise.
I thas turned my positive outlook on life into a negative one piece by piece, pill by pill.
We have to try to keep strong, try to keep positive, it is so hard, but we have to, we can't let it beat us.
Keep strong. xxx0 -
Hi Theresa, if you feel like sleeping every hour - then do just that, listen to your body and do what it wants rather than fight it. That way it will get out of this bad spell faster. Take the drug and try it - try and remain open minded and receptive - you never know - this might be THE ONE! Just because you consultant is a pessimist ... if it was exactly the same as the others there would be no market for it.
take care,
zzzzzz - oh your asleep again already .....
SpeedyI have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.0 -
Regarding the lethargy, it could be weather-related. Low pressure weather throws moulds into the air which cause all sorts of problems for people.I've been very dopey today too,
SpeedyI have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.0 -
I think it's the low pressure weather. The air here is thick, heavy and unpleasant. My breathing is ropey for the first time in years and I'm dopey for the first time since yesterday. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi - am sending loads of (((((((((((((((((hugs))))))))))))))))) cause I think you need lots of hugs!! hope this helps??!!!!
agree with comments on listening to your body - isnt that what you would say to others?
take care and let us know how you feel tommorrow, hopefully things will be better for you!!!
Louise xxxxx0 -
Hi Theresa - Just wanted to say that I am so sorry you are having such a dreadful time of it. From experience I really do understand what you are going through. Good luck with the GP tomorrow - I'll be thinking of you. Love Tilly xxx0
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Hi Theresa
we all know what you are going through
I seem to be going through a rough patch pain wise
Would love to have an hour of no pain it just seems never ending
Works a struggle & I know I push myself too hard but dont want OA to beat me Think Im too stubborn :roll:
But we should listen to our bodies & If its wanting to sleep then sleep dont fight it. I trhink its our bodies way of coping or its the damn drugs :!:
Take care hope you feel better soon
Love Maria x0 -
Hello theresa4. I hope you are feeling a little better today. The weather appears to be foul all over the country, heavy rain, thunderstorms, low temperatures - hurray! Summer's here! Grrrrrrrr. Rest if you need and if you can - I know that's always easier said than done. Wishing you well. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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we do understand what you are going through because most of us have been there but it will get better talk to the docs get better meds and the help you need we all try to stay positive and be there for each other as no one understands like we do ((())) for you take care it will pass but do get help and listen to the girls they know what they on about valval0
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Thankyou all for your hugs and kind words and advice.
I am still not well this morning and havent really come round for the past 2 days. Im sure its the pregablin as I have recently upped the dose to 50mg 2x a day. (I know others are on 200-300 but I couldnt get up on 75mg morning and night so my GP is staging me on lower doses).
I really want to go back to work as I feel my brain is decreasing sitting at home sleeping or watching daytime TV. 2 years and I feel worse not better. I know realistically I wont be able to do more than a few days per week, unless I get a miracle cure but Im with Dream Daisy on this Ive lost faith after all the DMARDS and 3 biologics failed. Its hard to stay positive and I have tried answering others posts on here giving advice I know I should take too but I feel like its just sugar coating.
My eyes have started drooping again and my head feels woozy so I reckon another 1/2 hour and I will be asleep again.
....sorry drifted off for 10 minutes glaf this thing doesnt time out
Thank you again
TheresaThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Oh poor you. It might be time for a review of meds, can you hang on in there and see if you do adjust? These drugs we take are powerful poisons, quite toxic in their way, and it can take time to accustom oneself. Thinking of you. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Sorry to hear you feel unwell Hun. Work seems a bit unrealisticat the moment, it sounds you just want to get some normality back which you can't have at the moment.
Just concentrate on yourself getting over this at this time. You have to put yourself first. Hard I know but it's the only option.
Take care of yourself
Janie0 -
Hi Theresa - sorry you are still feeling so bad this morning. It is so hard I know when you can't see an end to it.
Hope you manage to get to your GP appointment today. Will be thinking of you. Love Tilly xxx0 -
Morning Theresa
Are you feeling a bit better today?
If you need to sleep then sleep. Listen to your body.
Stress makes you very tired and I know we all feel a bit of stress with Arthritis!
Try to keep as positive as you can and hope you get some relief soon.
Carol0 -
HI all again thanks for listening
I saw my GP today and come out with more antibiotics as the ear infection still hasnt cleared :roll:
I also chatted about the dopiness and he agreed its probably the increase in pregablin so its reduced to 50 on eve and 25 mornings and if that doesnt help to reduce eve to 25 as well.
I had a word about feeling like taking all my pain relief he felt that it was unlikely I would do it but agreed I needed to try a low dose prozac to try steady me. He discussed chronic pain and how normal it was for me to feel like this as its hard to live with when your tired and in pain all the time. He wants to see me in 2 weeks to review me especially as I should hopefully have had a steroid and will be much better for a few weeks. he says he will keep an eye on me but not to get so down on myself as its all normal. He also feels a little aprehensive about anti D's as I am already on so much meds and not sure its what I need.(I hate the idea of antidepressants it feels like failure as my mum is bi polar and I dont want to be like her i know it sounds irrational but hey thats me!!) Had a good cry in there and I think I scared my sis in law as my hubby couldnt go with me she did and I poured all out :oops: . (maybe she will understand a bit more now though as he explained it all in detail. She had to come with me as I had a bad fall this morning due to being dopey and unstable with pain. :roll: I have a lovely bruise on my knee and my wrists feel like theyve been sledge hammered.
I really appreciate you all being here for me thankyou for listening hopefully I might feel a bit happier soon .
Love TheresaThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Anti-depressants are not an admission of failure, and your mum being bi-polar is neither here nor there. You are coping with a great deal at the moment, getting the right balance of these meds is a tricky business and it takes time. He sounds good, the doctor you saw today. He listened to you, took note of what you had to say and has reacted accordingly. It's good he wants to see you again, so make sure you keep that appointment! I can understand that you don't want more meds, but if they help to restore your balance and coping strength then that is a good thing. You can't carry on like this can you? Don't rush a decision, weigh up the pros and cons, then decide. Thinking of you. DreamdaisyHave you got the despatches? No, I always walk like this. Eddie Braben0
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HI DD
thanks for your reply
I decided to start the anti D as I am concerned about my behaviour towards my meds, maybe it will help maybe it wont.
Am still very sore from my fall today and apart from the physical bruises my ego is pretty bruised too, having to be escorted to the loo. My hubby has banned me from getting up without help as he says its easier to catch me than picking me up bruised and sore :oops:
Dont know how Im getting to bed tonight as the stairs look far too daunting. Id crawl up but my knees are bruised too.
Am hoping I will get a steroid injection tomorrow whenI see the rheumy nurse but not sure if I can have it with an ear infection?? anyone know??
Many thanks for all the advice and very straight talking DD you come across very forceful in your posts :shock: sometimes thats just what I need.
Love Theresa xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Hi Theresa, hoping that you are not suffering too much from your fall yesterday and that you are feeling a bit more positive now you have seen the GP and decided to give the anti Ds a go. And really, really hope that they can give you your steroid injection today to give some some relief.
Thinking of you.
Love Tilly xxx0 -
Hi Theresa,
I am late again you must roll your eyes at me! Sorry to red bout the fall but do glad you have asked for some help from the gp. Its a huge step both to take and also to wards helping you to feel better. A ((( ))) and so many hopes that you will soon feel so much better. Cris x0 -
Oh lordy, theresa4, I hope I have not upset you at any point. It is never my intention, but perhaps I do need to learn the gentle art of encouragement rather than the bludging of straight talking. (I so wanted to use the word 'bludgement', it sounds right but it doesn't exist!). (Come to that , not even sure 'bludging' does either. Oh well, ho-hum, it's the sound I want, I'll check the dictionary later.)
I cannot see the point in fudging around certain issues. It does nothing to help, it gets one nowhere. Grim realities have to be faced: none of us want what these diseases bring, they cannot be cured, the meds only disguise pain and delay deterioration, that's it. The only answer to 'Why me?' is 'Why not?', but, on the other hand, a lovely wallow in self-pity is sometimes the answer.
I had a stinking day yesterday, today isn't much better, but I know from past experience it will pass. I've been playing this game since 1997 (in complete ignorance of the rules until diagnosed in 2006) and I am well and truly hacked off with it all but is it going to go away? No. Is it going to get worse? Yes. Deal with it, DD is my answer to myself and deal with it I shall. I've had a couple of days off from dealing with it, but the old DD is re-surfacing, I'm getting back my 'French thingy' (thanks babycham for that, love it!) and I will plod on with it all. It's the only thing to be done.
You take care today, rest, rest and more rest is needed, your body will tell you when it's feeling better. Determining your meds and dosage is a fine juggling act, and the anti-deps will help you to find the balance you need to do that juggling. Thinking of you. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
HI all,
I am not too bad after my fall yesterday but am covered in bruises :roll: See Chris I can only roll eyes at myself as for you , youre advice and wishes are always well received whenever I get them Thankyou x
Was still very unstable so agreed to a wheelchair ride in the hospital down the long corridors :oops: its a horrid feeling for me like Ive lost control. :? The rheumy nurse gave me my new biologic meds to start when the ear infection has finally given up and yes Tilly a lovely steroid in my backside so hopefully by Sunday I should be my old self and independant for a few weeks.
DD please dont misunderstand my last post I think you are just what we need sometimes I think you give the forum quite a good balance and you are very knowledgeable in this area from your own experience. Sometimes you can make me take a gulp of air but what you say makes sense, certainly not upsetting.
So fingers crossed this new drug works although for the next few weeks I wont care much .
Love, hugs and thanks to you all for helping through this difficult time
Theresa (((())))There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Hi Theresa,
Oh I do know what you mean about wheel chairs down corridors but sometimes its better, or safer, for us to go that way.
I really hope the new tablets work and for once a (((( )))) on time Luv Cris xx0 -
Hi Theresa,
Just wanted to give you some support and gentle hugs.
Sorry not much help with your meds, but I'm thinking of you.
Lv, Ix0
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