Allways ill

[Rosey UK]

Hi

I never feel well. This morning was the best I had felt for a long time and I thought I would be going out  to the supermarket with my husband (the days on my own have been over a long time) However by the afternoon I just didn't feel up to it. I cryed with disappointment my husband assured me it was early days and I will get better soon especially now I'm taking the MMS. I'm taking it because I have had a really bad chest with horrible cough since 30th may. I started  on a weeks hols and we had to leave holiday early because of me feeling so ill and still do, until this morning coughs on it's way out at last. But then started to get prepared to leave the house and felt breathless and upset. Sometimes I wonder if I'm depressed or severely lazy. I never do anything just sit around and then feel guilty. Don't get me wrong I can't do much with my hands and wrists, and RA always active, always in pain and sleeping very difficult. The GPs given me some ibuprofen but only short term doesn't like me having anti-inflammatory for more than a few days, so I don't sleep. The breathless sometimes comes because I either have anemia or my lungs are reacting to the fibrous tissue they have now.

I just want to feel normal , go to places do things and have vitality. Please God

Sorry to be a moaner

Rosemary

[casey]

Rosemary,

I know how it all feels, i know. And i hate it all. For me , everyday is a struggle and a new thing happens, new pain, new nodule new…….etc etc and then i begin analyzing everything again. then comes the depression, guilt and upteen other feelings. Feels like just a merry go round .

Just want you to know you are not alone.

hugs,

Casey

[linda]

Hi Rosey,

So sorry to hear you are having a tough time of it. I know how you feel, it's so frustrating to want to do things but not be able to do them. I believe that there is a difference in the type of epression we feel compared to those who are clinically depressed w/out a chronic physical condition. A common symptom of that type of depression is a loss of interest in the things these people use to enjoy. What makes me feel depressed is NOT that I have lost interest in those things, but that I can no longer do the things that I enjoy.

I also know what you mean when you say you think you are lazy. We live in a fast-paced, move or die kind of society; if you want something bad enough you'll do anything to succeed, etc. It's impossible to explain the kind of fatigue that goes along with these diseases to someone who is not ill. They may try to understand, but we always wonder if, in the back of their minds they are thinking that we should just “force” ourselves to do things. If only it were that easy- so often when we force ourselves to do something we end up paying for it for days. Our friends see us when we are in a functioning mode, burt they don't see the consequences we face afterward. It's also difficult for people to understand when we have to cancel plans at the last minute. We may have seen them the day before or even earlier in the day, and seemed to feel fine. They don't understand that we can literally crash at the end of the day, or wake up and feel like we have been hit by a truck-for no rhyme or reason. It's one of the most difficult things about these diseases, we need the support of family and friends but so often we have to bail on them. It makes it so difficult to maintain important relationships, and it creates feelings of guilt and self-doubt within ourselves. Sometimes it feels like I only have the energy to do the neccessary things in life, there is nothing left over to go out and just have FUN.

I wish I had a magic solution for all of us, but the best I can offer is that you're not alone in how you feel. You are not lazy, but probably are understandably depressed. I have to say again, that IMO the depression follows and is a symptom of the illness, it does not create the illness.

The only thing I could advise you on is that it sounds like you're not on enough anti-inflammatories. AP is not as effective without taking something to keep the inflammation down consistently. Only taking it sporadically makes no sense to me as it seems it would give the microbes protection and time to recoup as the swelling returns when you're off the ibuprofen. Can you take an over the counter NSAID like ibuprofen or naprosyn (with food) on the days when you don't have the med from your doctor? Even the MMS has to be able to get thru the inflammation in order to reach the microbes and destroy their cell walls.

Give yourself a break; I think we sometimes fall into the trap of thinking that we should get used to the pain and fatigue because we've had it for so long, and that we should have learned how to function with it by now. But if one of our healthy friends or family woke up one day and felt like we feel every day, they would not feel guilty about taking the day off, calling in sick to work, etc., because the reality is that they would be ill. So are we.

[Tiff]

Boy Linda,

Your posts today have really been right on the money (including in another thread)!  Thanks for writing some of the things I was thinking – about how this disease appears to others, and how hard that is to live with!  You nailed it! 

[DianeWI]

Hi Rosey,

It is so hard to be ill day after day, then month after month and year after year.    I do what I can and rest a lot.  The AP has helped but not completely.  I still struggle.  Many of the things that I enjoyed doing I can't any longer.  My favorite was riding horse.  Those days are long gone.  I used to love to play piano and perform but I lost interest in that too.  It takes too much energy to practice.  I used to love to paint ceramics but can't tolerate the paints.  The list goes on and on.  But what I can do, I enjoy some too.  I keep up the yard quite well.   In the last ten years, I worked on the yard enough that it looks like a park here.  That gives me great satisfaction.  I keep my house pretty clean.  My patio is full of flowers.  I guess we have to change our focus from time to time.  I feed the birds and especially enjoy that.  I read more and pray more.   I guess finding different things to do may be key here.  I'm not so good at physical stuff.  Gardening I can take my time with and do a little every day.  I used to love to be out with friends but I no longer do that either.  It takes too much energy to be out and about and people can't relate to my simple life style and I can't relate to them.   I also don't work and it really hurts when people question me or assume that I'm lazy.    Often times we only notice what we are going through but there are so many more people that are suffering as well.  I guess we need to do what we can and let the rest go.  Easier said then done, I know.

Diane/WI

[spacehoppa]

Hi Rosemary,

I'm sorry you're feeling so unwell. I too know how you feel. It's so hard not to feel lazy, not to feel like you should 'pull your socks up' as my mum says. But it's really not that at all. When you're in the immune storm, as you are now and have been for a long time, there is no willing it away or shrugging it off. It's amazing you're not a hospital bed. You're doing so very well to tolerate all you do. (I'd have reached for the anti-inflammatories long ago if I were in your shoes.)

I'm still annoyed with your GP for continually letting you suffer this amount of inflammation without NSAIDS. I honestly believe that you need to tame it somewhat in order for the antibiotics (and MMS) to work. You need a certain level of health to build on.

Anyhow… I'm hoping that feeling well this morning was a glimpse of what the MMS or the AP is doing for you. I had some big ups and downs whilst on it. Big improvement and then feeling rough. I wondered whether it was die-off and sometimes I think I just took too big a dose on an empty stomach. Whar dose are you up to? How are you tolerating it? Any side-effects so far – diarrhea or nausea?

You are a trooper and I believe your health will improve considerably over the coming months. But you also need a little relief whilst you're waiting. Don't be afraid to see a different GP and get some anti-inflammatories. You could just take the minimum dose – even one pill every two days makes a huge difference, as long as you take it regularly.

Call me if you want a whinge!

Best wishes,

ruth

[A Friend]

Rosey,

I'm so sorry you are feeling so low.  Please know that all of us go through a time like this, but hopefully… little by little… it will all change for the better. 

Do you mind putting the date you began AP along with your signature line, that way we will know how far into AP treatment you are.  Having this knowledge is very helpful to us when replying to your post's questions and comments. 

Hang in there,

AF

 

[linda]

Hi Rosemary,

Just checking in to see if you're feeling a little better today. Thanks for your kind reply to my post. I wish I didn't know how you feel, but if I'm going to be sick I might as well use my experience to try to help others. It gives me some feeling of usefulness as well; as you know it's difficult to find needs that we can actually fill and find some purpose in our lives. I know that you have done the same for others. Hopefully we will both be able to share our success stories soon. Until then, I count every day that I get thru as a success.

Since my boys are all adults now, there's not much I can do for them physically, but they still need other things. My youngest is at school in Austin and calls me almost everyday to talk about school, his job, get recipes, etc. (last night his car stalled on his way home from work and he called me to see if I could help him figure out what was wrong. The silly bear had run out of gas, but his gas gauge was not working and he was not aware that it was broken.) Of course he got the mom drill; where's your flashlight, do you have an empty gas container in your trunk, fill your car up when it gets to 1/2 tank, etc.  I also told him that he was going to be fine, helped him find a plan and stayed in touch with him until he got home safely. Of course he could have managed without me, but it was less stressful for him to know that he was not alone.  On days when I wonder if I'm just here taking up space, I remind myself that there are still people who need me, even if it is just to talk about a long day at work or a difficult exam. My older 2 also call for various reasons, and the conversations are often about things in which you can only talk to a parent. We're still needed and there are many things we can do to help our loved ones. It's definitely a different type of help than we imagined we would be giving, but that does not diminish it's importance. Especially to a young man stranded in a dark parking lot and trying not to sound like he's just a little panicky!

I'll bet if you look at the things you do for others it will add up to more than you think. Anyway, that's my pep talk for the day.  Better days,

linda

[Rosey UK]

Hi Linda

I cryed when I read you rmessage about your young son ringing you. Mine still does that he's 27 now but he's my youngest, my 2 daughters are 40+38yrs.

I know how you feel about being needed and we will always be needed by our families we are so important to them. My Son asked me to prommise him I would'nt die a few months ago. His mate that he works with  Mum died, and it shook my lad up.

Even though I promised him, at the time I didn't believe I could stop it.

A few days ago I started prednisalone and I feel normal again, i'm going out and enjoying this new energy I'd forgotton excisted. I can't tell you how good it feels and I don't want it to go away when the preds stop!.

Makesure you 're not doing what I was doing, NOTHING WHEN I NEEDED HELP!

Hope to hear from you soon

Love Rosemary XX

[marionm]

One word, BRILLIANT!!!!!!

[spacehoppa]

Rosemary, I'm so pleased you got some steroids and with them some relief. I know this isn't what you want to do really. But like I say, you've got to have some health to build on and you sounded like you were going downhill rather than up. Steroids might not be ideal, but they do make you feel like a different person within days! I should know, it's all I can take now I'm pregnant! (I just had a lovely knee injection last Friday and the relief is amazing!)

Hopefully once the steroids take the edge off the situation you can begin to make real improvements with the abx. It's so good to hear you sounding happier! 😀

Best wishes,

ruth

[orchid]

I just came across this thread. First off, Rosemary – how are you feeling lately? I hope you're doing a little better…

Your post brought up the questions of AP and NSAIDS. Most have said it's good to be taking some sort of NSAID while on AP to keep inflammation at bay. Is there anyone who has been on AP for awhile who is no longer taking NSAIDs?

[Author]

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