I am soooo tired and I hurt allot, I love life and doing things. I want to try something new everyday and I want to learn something everyday. Thankfully with my trusty computer it's not hard to do that.
But I have reached a point where I just want to cut myself a break. My spirits willing but my body's weak. My spirit has won out for a long time drgging a stiff and sore, weak and dizzy body but now this poor old body just wants to find a soft place to fall and stay there.
Is there anything wrong with that? It seams that somewhere through this whole health journey that there has been a montra planted in my brain that says "if you give in you've given up" so I just keep going.
But I think of all the people that have health issues that keep them immobile, they aren't quiters it's just a hand they have been delt and they live life from thier bed or chair. They aren't giving up.
I have chased physicians for help and waited and waited for appointments only to find that the day I finally get to go I am feeling ok and they send me away saying "you're not doing to bad". Well what about the days I can't hardly walk? Or eat, or sleep or see straight and on and on.
I don't care anymore I am staying in bed for as long as is reqired to get well or to move on to the next life.
What do you think about giving in or giving up? Sandra
Hi Sandra :)
I'm sorry you're feeling so exhauseted, down and frustrated. Because of the kind of person you come across as - I can't imagine you totally giving up.
This is certainly a disease we have to 'pace ourselves' with. It's a case of balancing out what we can do and what will be overdoing it and making things worse.
If you're having a bad day - and can hardly walk - then don't. Do things on the 'good' days. Physically I'm not nearly as acytive as I was a few years ago. I regret it but I can't do it so I don't. I try to keep busy mentally though and I find my computer very helpful with this!
I think you need to talk about your feelings to your doctor because you are sounding really down and I think they could help. I know once when I was down I didn't really want to talk to anybody - including my doc - but I did eventually and it did help.
Take care - Scottie :)
Well it's not really that simple, just don't walk today. I run a business, a household, look after my mom etc... I have a life that can't be ignored. Nor do I want to ignore it. Even if I did it just becomes a huge mess to sort out "when I'm feeling better" which is never as far as pain and fatigue. I just carry the two (pain and fatigue) along with me wherever I have to go because there is no other option. In order to rest, "again", I have to stop my life which acts like a train wreck. Everything just keeps piling up not getting done until it's kaos. Then I have to get up sometimes even before I'm feeling up to it to sort everything out again. So is the answer to just stop the train all together and find another life that is easier. That's what i mean by giving in. I am thinking that I just cannot be who I once was physically. And there are no, zero doctors that I have found to help.
I have three specialists not counting my GP as he is a right off and all I do is work to keep nicey-nice between offices who refuse to coordinate the appointments the doctors ask for. It's ridiculous. Today I finally told two offices that are supposed to schedule an appointment for me to see my endo and my rheumy on the same day, at the specialists request! I was told that that would be impossible and that i would have to get each Dr to write up an "emergent" appointment request! Good heavens I'm 2 hours away and both doctors where right there at the desk the last time i saw my endo. (they work in the same clinic area) So what does this mean that I am not telling the truth? Or that I am supposed to do their job? I told them both "tell you what I'm the patient ;D i am really feeling miserable, too tired to take care of myself let alone run the office for two specialists. Forget about it, when I see my rheumy in the end of June. I'll let her know that the appointment was not possible. Better yet maybe you'll be lucky and I won't even make it that far and then you can just take me off your list altogether." this kind of condition requires careful attention and sometimes many appointments here where I am if you can get an appointment in 6 months as a followup you are lucky let alone getting in when everything gets out of hand.
Giving up, to a new different life and a new normal, to something I can handle sounds expensive and impossible.
What do you all do when there just is no time to be sick? Sandra
How well I remember those days, Sandra...for a very long time my answer to the "what do you do ..." question was, I just keep doing it! Ignore the consequences, deal with the pain, and collapse when I get a chance! My answer to just about every crisis (except those pertaining to me personally) was "I'll get it done and meltdown when I have time". Any crises that did pertain to me personally (usually health related) got pushed to the back burner, probably the reason for many emergent trips to the hospital resulting in forced rest time.
When I got to the point you're at now, my doctors ganged up on me, and convinced me that taking time to heal wasn't giving in, it was, at worst, accommodating the limitations of my various diseases to allow them time to let my body catch up.
Granted, my situation was different...without me, the hospital I worked at continued to function, my adult family continued to be fed and sheltered, and people I had never met but felt responsible for (because I was responsible for the whole world) were fine! Sure, housework didn't get done (still doesn't like it used to). I didn't get to the gym, the marathon rallies, the fund raisers, or the volunteer work, but they all carried on without me.
Last time I saw the rheumy and my answer to his usual question, "How do you feel" was "pretty good, rested actually". He then reminded me that I was probably more rested because I hadn't just worked 4 twelve hour night shifts in a row, volunteered at the library for 2 of the days between those shifts, and worked out for an hour every day at the gym, and he didn't even know about the wedding catering and taking the girl guides on a hike (that is a summary of the last week I worked).
Changing your lifestyle to something more suited to someone battling a debilitating disease? Not giving up or giving in, in my opinion, its an acknowledgement of reality, and a step toward improving your life.
Hi Sandra,
I'm so sorry that you are feeling so down and frustrated. I think that the feelings that you are going through are very normal....we all go through cycles like this (at least I do). I finally started to feel so bad that I went to my doctor and asked for help and he gave me medication to help level my emotions. I was very against doing that in the beginning, as I was too proud at first and didn't think I needed medication to help my mood. But I sure feel better while taking it. Its not uncommon for people with sjs or any other AI disease to get depressed....it kind of comes with the territory and also when you have so much pain and frustration.
As far as the "no time to be sick" feeling, I think that is common as well for many of us.....we have no control over that though as no one wants to be sick...so we have to learn to deal with it whether we want to or not. Eventually we all come to that acceptance stage and we learn to adjust our lives as we need to.
As far as your doctors attitudes when you go in to see them, it may be helpful to write down a symptoms diary and that way (even if you are feeling ok one day) you will have a record of all of the others days that you didn't feel so good! You can just write down how you're feeling from day to day....if anything changes and why....medication changes and tests results. It is very helpful for the doctors to see and they usually always appreciate the information.
I hope you are able to resolve this soon so you feel better....please let us know how you are doing!
Lots of hugs to you.........
Sandra down time is not giving up. It is just giving your body time to store up more energy. Many time I stay home four days or more a week so that I can get out and run all the errands necessary for one full day. I have learned that I cause more harm than good by just trying to push through the fatigue. That just causes me to fall on my face for days and nothing gets done.
Call it mini vacations. Stay home lay around, read a good book, soak in a warm tub and consider your job for the day to be healing your body and restoring your energy through rest. That for us is hard work!
I am totally with salgen. I have found that if I need rest I just have to make the time and get the rest - otherwise I just continue to feel bad or worse. Used to push myself through when I was exhausted. With SJS I just can't do it. By contrast if I allow myself time to recover I get back to semi normal pretty fast.
Tuckerdog
Hi Sandra :)
I apologise for my first answer being so glib. I truly don't know how you manage to do what you do and if I was you - I would be trying to cut back somehow.
I guess the first thing I'd cut back on would be housework. I'd prioritise what absolutely had to be done and let the rest go hang!
Can you get any help with caring for your Mom? I know how close you are and how much you love her but even an hour or two of respite care to give you some 'you' time might help. The best of carers need time out.
Obviously I don't know about your financial situation but is there any way you can scale back on your business or even sell it on and do something else that is less high powered? I used to work 35 hours a week. I've scaled back to 22.5 hours. That I can cope with. I'd miss it if I didn't do it but I couldn't cope with 35 hours any more. I'm lucky though because I know hubby will support me.
I think you're a truly amazing person. Giving up a little bit of something really isn't the same as giving in. Maximise your capabilities but don't run yourself into the ground in the process.
Take care - Scottie
sandra
I think everyone has this battle one way or another , im 37 i have a home to run, i can no longer do my job as a staff nurse in terminal/elderly care, i have 2 boys 9 &13 who have had everything done for them, day by day i have sat and watched my carreer , house and garden go to pot.
I must say at times that just gets me down so much, my once busy ful life, is now a boring bland shadow of its former self in comparison, somedays i just cannot do much at all, other days my life is a tad easier.
I have enver lay down to anything, a violent father, a hyper critical mother , 2 broken marriages , homelessness , nor have agave into deranged neighbours who have threatened me , i have stood up to every thing all my days, and now SJS and fibro its my new battle.
if you dont lie down you ll fall down is way i see it, i dont see not gettign everything done as lying down to it, just adjusting to it, My name means the battler and its seems my whole life will be exactly that , but juggling all those balls will lead to dropping more than you catch :(
I understand financially you might need to work , we cant live on fresh air, but you need to decide just exactly what you need and how you can do that as best you can whilst not leading yourself into a collapsed state . I used to be OCD about my home and garden , now my floor looks like the cat is lying on it even when theyre not, the skirting boards ahve dust, the ironing pile looks like north face of the eigor, i decided good proper meals for my boys was more important than cleaning ,their homework is more important than a fancy home. my life is more important than my career , my happiness is more important than setting goals, its taking time to adjust , not is NOT giving in, as linda says its accepting reality , and everyone here knows thats harder to do as say.
You and your mum have been through so much, youve achieved so much, how you do what you do i ll never know, but give yourself credit, youve beena shining star to your mum, while being ill yourself.
I made a list of what i can do, what needs to be done and what can go to hang as scottie says, if ppl dont like the fact my whole house looks like feeding time at the zoo, i couldnt care less , let them have SJS and see what they could do with it.
Not that anyone can say how you yourself feels, but dont discount the fact that youve been dealing with stress from every angle and your mood is bound to suffer, if your nott aking something for it, you might want to at least think about it, taking medication for it isnt giving in either , its again being realistic .
Just know your not alone everyone has responsibility and work and financial pressures, we all been there or will be there , having to drop a few balls so you can juggle the ones that are left is not defeat, maybe you could pay somone to work a few days a week to run the buissness so you could be par ttime, i dont know if thats possible? , what i do know is were al heros in our own way, life goes on , every day we face this illness we faced alot and continue to do so , each day is its won battle, but each day remind yourself of how much you actually achieved considering all youve got on your plate.Youve done your mum and you rpoud woman, never doubt that no matter what tomorrow brings
T x
Thanks everyone, I don't mean to sound sound sarcastic, about just don't walk today. I do understnd what you mean, I just mean there's just sometimes when one must walk. No matter how I scale back there are always going to be those days. I just don't see how one can scale back enough unless institutionalized. My cousin has MS and she has had a particularly bad case, she has been in a long term care type situation for a few years now. She has no worries about keeeping up with life, she takes care of herself full time, it's a job in it's self.
So I sort of feel like I am right there many, many days and other days I'm more able. There's a whole gray area around that fine line of whether physically I would be so much better off there and yet on the other hand it sounds absolutley ludicris.
Thanks Sandra
Hi Sandra
I want to thank you for raising this issue. I think it's one that we skirt around as individuals and as a group who seek to support each other. On one hand there is your cousin who has MS and has got to the point where, as you say, just taking care of herself is a job in itself. Her losses must be immense but she's made the transition to full disability. I thought it was very moving the way you described her as having 'no worries about keeping up with life'. What a sad situation, and yet part of the struggle is over.
On other hand, for those of us who are still engaging with that struggle things are not so straightforward. Each day we try to be as 'normal' as possible, to function in the outside world and at home. Each day we're reminded that things are not as they used to be. And that is painful.
I struggled to keep going doing a very stressful, but rewarding, job; to home school my daughter; to be a mother and wife, and caring daughter; a good and supportive friend. It took the sledgehammer of SjS with cns involvement; of partial/major loss of mobility, use of my hands and speech; and being in constant pain, to make me take a good long look at my life. It wasn't a choice for me to make; my body made it for me. I still struggle with this most days and I think I will continue to do so. It's painful, but it's real and I know I'm not alone.
Keep posting and letting us know how you are. As the others say, we're there with you.
Chickpea xxx
Sandra, I think that you have "hit the wall" as they say. I don't know how much physical work it is to take care of your Mom, but it might be time to have her go into "respite care" for several weeks to take the burden off of you for a while. Also, is it possible that other living accomodations can be made for her. You do have to take care of yourself, because if you aren't in good shape(or as good as can be expected under the circumstances) then you can't help others safely.
I think it is time for you to take a mini vacation. Find a bedroom that you can hibernate in for a few days and watch movies, sleep, whatever your little heart desires. After you have gotten rest and relaxation for a couple of days you may havae a little different outlook on life.
All of us have been in this position. I got to the point many times where I did not want to have to go chasing after one more doctor who wouldn't do anything for me anyway. I just would do the denial thing for a few weeks and then I would have a chance to think about a different plan of attack. If you have doctors who are not helping you it is time to find someone who will help you on the quest for treatment. I know it is not an easy task, but it is well worth it.
You don't deserve to be miserable and there has to be someone out there who can make your life less miserable. As far as changing your lifestyle, you are right---sometimes it has to be done to keep you from imploding. Is it possible to designate chores to other members of your family??? The stress of helping in the family business is probably one stressor that needs to be re-evaluated. Hopefully you can find the right combination that will help you.
If you are having real problems getting doctors care try finding a patient advocate or social worker at your clinic or hospital that might be able to help you in your search. And yes, it is possible to schedule 2 appts on the same day. I have had as many as 3 on the same day. Generally have to do this at least 1-2 months ahead of schedule. The receptionist is being lazy. I always explain that I live far away and need to make only the one trip because of my health and because of the cost.
I really think that everyone needs to be really ill for a while during their life in order to fully understand what we go through. They think we are being a pain in the -----. No we are not!!!! We are trying to endure in really rough conditions and have to think ahead to save our energy. Good luck. IRish ;D
Sandra
I'm sorry you are feeling so low but I think Irish has hit the nail on the head. I remember a long time ago, when I was the one who was always there in an emergency, a Christian friend of mine said, ... 'Kathy, you can't love your neighbour as yourself, unless you love yourself first'. How true that is. If you want to be there for your mum longer term, you need to recharge your own batteries now, and learn to love yourself.
Sending you healing hugs.
Kathyx
Sandra,
I am so sorry how you are feeling. I soooo understand. And I am thankful for you laying your heart out to us.
We all need to hear the answers you have received here, from time to time. It is good for all of us to confirm in times of despair.
As I have read all the replies. I can not add anything that has not already been said.
In fact I know that if you were up and going, even your answer to some one else under the same frame of mind and stresses, would come just as you have received here.
Readers digest condensed version-- You are handing out spoons you don't even have. We all know the spoon theory.
I am praying, that some one close to you can see your need, and maybe feeling as you do, it will alarm someone in your life to help you minimize your load.
Please do, as your sjoggie sisters have advised and take a mini vacation; think on anything movies, books, just sitting and gazing out a window, talking on the phone to your most up lifting pals . think positive thoughts, recall found memories. Appreciate Sandra :)
I call it getting off the merry go round. I visually see my self getting off the spinning world just to sit still awhile.
You have to find a way, to do that.
I am praying, blessings and hugs, kimbo
Hi Sandra,
Todays a new day. ;D Some times a brand new day can lift our spirits from days past. I'm sorry you haven't been feeling on top of the world lately. I'm sure you wish the weight of the world would get off your shoulders already . . and rightfully so.
Something I keep thinking about is does your family / friends KNOW you could use some help with your job, with mom, etc.? I have found that sometimes people have no idea what is going on in our lives and they think everything is honkey dorey. One would think all the clues are obvious, but they aren't (especially, if they aren't looking for them). You might have to just ASK for what you need. I have found that people are more than willing to help out once they know there is a specific need that needs to be fulfilled.
If you belong to a church or another group if they knew what your needs were - perhaps they would be able to help you out also. Even if it was to sit with your mom for a couple hours so you could go take a long shower/bath, nap or whatever you needed. Sandra time. :)
As the saying goes . . . tie a big knot and hang on.
Bucky
Thanks all, doing a bit better yesterday and today. but I have invested in a BP wrist monitor and am finding perhaps my BP is the culpret. As you know I have Addison's disease. It's not the worst thing in the world to deal with but it is a balancing act. When momwas really sick in Dec/Jan I had to increase my steroid (prednisone) to compinsate for fatigue and for a cough i was dealing with re dryness/hospitals and sjs. The steroids keep me alive but they are tricky to balance as well after the stress is over and I'm tapering down.
My BP has been fluctuating madly from 145/95 heart rate 85 to 11/68 heart rate 98.....all I can think of is that my electolytes are out of wack?? I did also do some reading lately on a problem called dysautonomia. I wonder about that as I have much tingling and motility issues with my stomach and GI tract. Also some pretty bad chest pain and neck pain and headaches. I am also battleing the worst case of brainfog i have ever had, and terrible memory problems that are so bad i don't even worry about it anymore it's gone on for a month or so. But I have never had to double the prednisone for that long before either.
As mentioned all of this makes me think I should see my rheumy and endo but i just can't get in until June 24th.
If thing s continue I shall make the 1 1/2 hour trip to the Kingston ER and then maybe get to see my specialists that way. My ER is good for broken bones but my situation is way beyond their scope and/or interest.
But I managed to go do something I have wanted to do for ever and I am so excited to start...now if I can just reserve the energy to do it.
Oh by the way as far as asking for help i have done that for years I have a few wonderful helpers my hubby, a good friend and one sister. The rest as far as care for my mom are just "visitors" ??? >:(
I will add a link to my new adventure. (hope it's ok?) ***sales link removed***
I am in no way affiliated with this site, just to show you the idea. I already do broken china garden furniture. Gotta go, I'm bushed! ;D Sandra
Hi Sandra
It's good to hear you're feeling a little brighter. Your blood pressure certainly is fluctuating wildly. I think ER sounds like a good bet. June is quite a way away and I really think you need medical input or monitoring.
Hang on in there.
Take care - Scottie :)
Sandra,
So glad you are doing better. :) You have so much to deal with, I do hope those near you understand your need of help. I am glad for what they do help with.
hugs kimbo