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There has to be a better way?

550 Views 20 Replies 13 Participants Last post by  onetay
Hi everyone,
Today is a rough day, very tired (even after sleeping for 10 hours), very sore (even with the pain pills), and hands and feet are so swollen today. There has to be a better way to handle all this than the way I have been. I have to get all this under control in the next few weeks, because I have the 40 hours coming up to work for at least 4 weeks. I want so bad to be able to do this. To prove to myself that I can still if I have to. I do everything I can do stop the fatigue yet it still is there. I take it easy on the days I don't work and still the pain is there. Does this mean that it is not managed like I thought it was? Is there anyway to get this managed? It has come to a point that I just don't want to do this any more. My body is in pain all the time and the more I work the worse it feels. My mind and heart say keep working that I can do it, but the body feels like it just wants to stop it all. How do get them all to be in the same place at the same time and feeling the same way? Well that will be the big problem I have today. Sorry if I am not myself today cheery and happy.
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Sorry your down and out and just plain not feeling well. Since my recent appt. with the doctor maybe you would benefit from the same, Prednisone with Tramadol for wide spread pain. I also take Provigil for fatigue and for me it has been a life saver.

I hope you get feeling better too. Keep your chin up my friend.:wink2:
i wish there was

hi tammy

i'm sorry to hear that you are feeling so so bad. i'm amazed that you are even considering working. actually i'm amazed that alot of members work let alone a full 40 hour week. i had to quit work a few years ago and go on disability. i have great admiration for you and those who do continue to work. i guess i'm just a whus. it takes everything out of me to wash my hair. karolh suggestion of provigil is a good idea. i use to take that for awhile but then i noticed that the next day i was very tired cause i would over do so if you take make sure that you still pace yourself, now this is how it affected me, meds affect everyone different as you know.

i hope you are back to your usually happy and upbeat self real soon. :foryou:

take care and feel better
hugs and kisses
Tammy, am sorry your struggling at the moment. I would say follow what your body is telling you. i too work as you know , I clock up about 52 hrs a week. I can't do anyhting else but I need the money. I don't know what your financial situation is but i know if you can afford to cutting back has no shame in it whatsoever. it doesn't mean you can never do those 40hrs again, it just means your body doesn't want to do it right now...

You have a great attitude and spirit. If you can cut back, hope you feel better soon xxP
:eek: Just looked up the provogil as I had never heard of it. It looks like some real scarey stuff
Thank you all for your support and advice.
Karol I do take Ulram already but I limit it to one in the morning and one at night. The gp wanted me to a low dose of preds to my resume of meds but was affraid if I did that it would not help me when I do have a bad bad flare. The time I took the 6 day pack they might as well of given me sugar pills for all it did for me. I am in the provigil and will do some research on it before asking the doctor. Thank you so much for the support and for the new med to look into.
Spell binder thanks for the encouraging words, working is all I know I have done it since I was 14 so I do not know anything else. I guess you can say that is my biggest fear that I can't work soon. I had to finally cut back my hours in september of 2008 (which I thought was going to kill me but I found a way to survive that). My boss has that surgery coming up March 31 and she will be out for at least 4 weeks and is depending on me to keep things going and in order I am just not sure my body is up for it. She has been trying me out this week on 32 hours and I think that has something to do with why I am feeling so bad now.
Pollianna Iam very much like you. I have to work because I am the sole income for me and my daughter, and as I said above it is all I have ever known. I know a lot of people say you get use to it but what if you don't than what? I can't stop working for a few reasons one of them is money we have to live and the other is it keeps me going. Work gives me a routine to follow. I just can't see myself not working and at the moment I really don't see things getting better either. I do want to thank you for the link on the medicine that is a great help.
I hope you are all feeling well and getting along fine.
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pollianna;537967 said:
:eek: Just looked up the provogil as I had never heard of it. It looks like some real scarey stuff QUOTE]

I think any medicine you look up always will let you know about negative side effects of that drug. It does not mean that you will be effected negatively by the drug. I can honestly say I do not have any of the side effects that they list can happen.

I would advise anyone to do the research and chat with their doctor about it. As with any drug, the benefits may well out weigh the risks.
Hi Tammy,

I think you should talk to your rhuemy and tell him what is going on. Tell him what you just posted. He would be the one who could help you figure something out.

You can go in and ask him if certain meds would be of any benefit to you. He knows what meds you are taking and if something else will go along with what you are already taking.

Being in pain and exhausted is tough.:hug: I hope you get to feeling better soon.
I'm with Spellbinder when she wrote "i'm amazed that you are even considering working. actually i'm amazed that alot of members work let alone a full 40 hour week." Now I am so grateful to have been able to retire early but it was pretty traumatic at the time. What was so hard turned out to be a great blessing. I hope you will find the right decision.
Hi Tammy, sorry to hear that you are not your usual happy normal self. Please take it easy and don't stress yourself out. Do what you can and if others are not satisfied with that then they have are the ones with the problem!!. Sorry if it sounds sarcastic but my sense of humour has got "warped"!!

Sending you loands of hugs and kisses.

Take care
Tammy, sorry you are feeling so 'naff' at the moment, I also think you should get in contact with your rheumy, tell them what is happening, how you are feeling and what is ahead of you; you never know they may be able to come up with a med plan to help you through the next month or so... even if you don't quite manage 40hrs, your boss would still be pleased with cover for the majority of that time... and that depends on you pacing yourself, so work may have to 'give' a little. It may be a question of quality over quantity, certainly worrying about it will make your symptoms worse. :( You may feel a bit more in control if you have some medical support and a plan of action!
I hope you feel more like your old self soon... please take care and get some help. Hugs to you and brighter times ahead..
Claire X
Tammy, So sorry you are going thru a tough time. Just a thought... Could the fact that you had to make this commitment of working 40 hours for 4 weeks be causing you great anxiety,therefore your body is responding to the stress? I pushed myself beyond my capabilities the last 2 years before I went on disability. I loved my job and I was always known as the dependable one, therefore, I did not want to disappoint anyone. Looking back, I realized, I should have learned to say NO when asked to do all the extras. I eventually just hit rock-bottom and even the smallest mole hills turned into mountains. I physically and emotionally collapsed. Why do we have such a hard time putting ourselves first when needed. Please take care and I hope your Cheerful Spirit returns soon and you feel better. Rosie
I have to say that some of you made me cry from your out pouring compasion. When I came on this site it was to educate myself and help others in any way that I could even if it was just to make them smile once today. I have been finding myself relying on all of you here lately. That is not a bad thing as that is why we are all here for support from those that understand what we are going through. I don't physically feel better but emotionally I could not be better thanks to all of you. I guess my big fear is that I can't do this even with the doctors or the medicine. They want me to be the person I was 2 years ago and I can't be that person, that person was lost when I went 18 months with no medicine other than a pain pill. I have not figured out what I am going to do at this point, but I do know I can't do the 40 hours and the extra work that will come with it and the stress that will be put on me. I feel this way in part from the stress that has been put on me to be something I am not any more. I have filed for the disability social security and if it means not working any more than that is what it will have to be. My body is telling me that it is time to slow down before it gives out completely and if I don't listen to it than I have one to blame but myself. I hope that you are all doing well and feeling better.
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Hi Tammy,

I think your very wise. You know, when it is time to slow down. Yes, your body is telling you, it is time.

Tammy, your always so very helpful to everyone else, don't give a thought, to apologizing for not being "upbeat", in your posts. I for one, admire you and your determination and supportiveness, of others here on the site.

I hope you feel better soon, and your pain and swelling goes away.

Please take good care, and give yourself some pampering! You, really do deserve it, Tammy.

I agree with Sage Hen, please do NOT say your sorry. You are always there to offer every one advice when they need it and to listen to us when we need a ear.

We are here for you whenever you need us. Soooo, go ahead and rant and rave all you want. Your allowed!!! I also think your very smart to slow down a bit.

Good luck moving ahead.
(((gentle hugs)))

Pain and fatigue are just so hard to deal with, I hope that things will improve and would agree that it might be a good idea to talk to your doc about just how hard you are finding things to manage.

I think it is sometimes neccesary to change what we are doing because that just clearly doesn't work for us any more, and I hope that whatever you decide to do will bring you a much easier time of things.

Very best wishes xx
Hi Tammy, you are one of the first to welcome new people to this family and wish them all the best so please never say sorry (I know it is hard not to).

We all think you need a big soft hug so please accept my little soft hug.

Take care love as always.
Tammy, many hugs from me too. This must have been such a hard decision to take and especially hard to make because you were faced with this prospect of full time for several weeks. Still it often takes a full on crisis for us to face current realities we have been able to ignore. I know exactly what it feels like to be forced to bow out of important parts of one's life.
You have been feeling so unwell for ages now it does sound as if your current hours are taxing you to the limit. Like Douglas, I am constantly astonished how people manage to cope with work demands or family or both.

It must be hard on financial as well as emotional grounds. You are the only person who can judge all the elements of the situation of course, but I will just mention the possibility of taking Prednisone to tide you over. The Plaquenil can hardly have kicked in yet and maybe there will most likely be some other helpful med that will make life easier. Please don't think I am trying to persuade you to change your decision.

There are many people here who have had to make this decision and I am sure you will hear from them how they felt and how they coped. I get the impression that looking back most realise they did the right things and probably should have done it sooner than they did.

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Hi Tammy,

I haven't replied here before because I simply didn't really know what I could bring to you.

It is so hard when we are being pressured from all sides and when, financially, we really don't see that we have a choice in the matter.

I think you do really need to see if your doc can help you get through this particular hurdle. The thing is that there is no quick fix and we can't keep taking extra pred etc. if it is just to get through a day, or a few, or a month... At some stage we might need to reevaluate where we're going in life.

There may also be an element that your disease can be better controlled. Then again, there may be an element that you haven't been listening to your body (yep I'm amazed to at how you have kept going) and that there is such an accumulation of fatigue that it is making your disease even worse than before.

Two years ago I was in much the same situation. I had already reduced my work time down to three days a week (which was just enough to get by financially) and I was constantly being pressured to accept just one more day, one half day, one assignment... and so it went on and on.

I had told people I wasn't well, I mean hey, they kept telling me I looked awful but NO, they just didn't get it that when I said unwell, I didn't mean a cold that was going to get better and then I'd be fine.

I had just finally got a diagnosis and I had got that because my disease activity had just decided to explore a whole new universe, that of difficult to control and totally impossible to struggle through.

In the end, I just literally, simply couldn't do it. I had a three day intensive course with a student I knew well, who was thankfully very understanding and I just couldn't do it...I struggled and yawned and brain blanked my way through then called work and said "that's it I'm off!!!" My docs had been pressuring me to stop for ages and I did, I had to, there was no other option. Only then did people truly realise that I was actually ill. After all, before I had complained (or rather stated, I'm not much of a whiner :lol:) but had kept going and my students hadn't complained (er nope, I had been working with many for many years and they had become almost friends - also, I used to give my last ounce of me, gave my all until nothing was left).

Of course, at first, I thought that after a couple of months rest I'd be OK. I wasn't but I am a whole new kind of OK. I actually feel that I have a life now. I live rather than "survive" and I can enjoy life and my family. Before everything was based around just trying to keep going and get through another day. NO FUN at all.

I don't know, some things to mull over. You're going through a hard time with a lot of anxiety and a lot of stress but sometimes these hard times force us to think, step back and reevaluate life.

love and hugs :hug:

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