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cordila

Do Any Of Us Actually Get Better?

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It's been a frustrating winter. I moved to Seattle and out of my parents house (YEAH!) in June. By October, the standard Seattle gray sky moved in and my boyfriend and I both got the stomach flu. That was in OCTOBER. Since then, I've had every flu under the sun - stomach flu 3x, horrifying cough from Christmas to mid-February, and now I'm struggling with bouncing back from another 10 day long flu. On one hand, I know this has been a horrible flu season for everyone and except for the 7 week long cough, my boyfriend has gotten every flu right along with me - so I know it's not just me and some sort of ongoing episode. The problem is...I'm exhausted, mentally, physically, and emotionally. A few weeks ago I noticed a funny skin patch on my chest and it looks like skin cancer (my dad has it so I know the look). I'm at the end of my emotional rope. I'm sick of doctors. I'm sick of illness. I try everything under the sun to help myself to feel better - sometimes I win a small victory but most of the time I lose. So I'm sitting here on the couch looking out at another horribly gray day and I'm thinking...do any of us ever really get better? I would be so grateful for any 'success stories'. Anyone?...

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Hi,

I don't have a success story I am sorry to say, but I sure do empathise. Especially right now....I just got through posting about houscleaning....I know what you mean about the flu, and the cough....I have an ongoing cough I can't get rid of. Mines been going since October or November I think...possibly longer, I can't even remember anymore. Last night I had about a 2 hour period, where I felt really good. I mean so close to normal I was hanging on for all I was worth hoping it would last. It didn't. Maybe with more time. Who knows. I am so sorry for how you are feeling...I wish we could just take something or do something and have it end! I hope things turn around for you real soon.

Hugs

Suzy

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i'd like to believe that we do!!! We need to introduce a clause when joinging this forum...'those who recover or make a good partial recovery MUST report it!" if i ever do ill be sure to post.....i know a couple of ppl have posted that they have made a good recovery. And on another forum people have noted success on an exercise program that has 'cured' them or at least given them back some functionality! more info www.ieemphd.org

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I have not recovered completely but I feel comfortable where I am. I will be hit with horrible fatigue out of th blue and that's real scary specially if I have to gt though the faigue while driving with the kids. I'm ready for another baby but my huband said no until the fatigue gets better. He's afraid I'll be so fatigue I drop the baby.

I don't know maybe I'm just use to the daily changes of POTS because the more I think about the more sx I think of. I got rid of the major sx of nausea and chronic migraines so I guess thing are just getting better

Good Luck to you

Dayna

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I'm sorry you're feeling so bad. I just wanted to say that yes it can get "better." (And I'm kind of guilty here because I was on here all the time when I was feeling really sick, and then dropped off when I started feeling better.)

Of course, better is, by definition, a relative term. Our collective reality is that we are living with a chronic illness. But, for example, the fatigue has changed to tiredness, and sometimes even that goes away. You can do an awful lot of things when you're just a little tired that you can't do while you're truly fatigued, and I'm glad for the chance to do them. Sure, I flat out fell asleep at a bar the other night where I was attempting to listen to a band- apparently, at some point, I turn into a pumpkin and just physically can't go on. But before, I wouldn't have even been able to go in the first place. (Actually, it's a funny story- A waitress came over and asked if I was okay. D/H apparently said oh, yeah, she's fine and no, she hasn't had too much to drink- she's just got POTS and needs to rest for a second. You can imagine what she though he said I had. I had to wake up and explain what he meant). And, of course, I have a lot to be thankful for anyways, so I try not to complain now.

Also, I'm not sure why I started to feel better. Part of it is definitely that my med combo started working well (course, as I posted before, that's a difficulty now as my toprol xl has been recalled, but that's another story). Part of it is that I've learned a lot about what I need to do to stay feeling okay and the lifestyle modifications that were hard at first have just became normal (working with my feet up, drinking enough water, vitamins, all that stuff). But some of it is just a mystery- the fact is that we still don't understand the autonomic system all that well. We don't really know why it goes 'bad' in some of us - and we don't really know why it turns 'good' again. Sure, we know some stuff that hurts and some stuff that helps, but the rest is a mystery.

Bottom line though- there IS hope!

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I got better!

Born healthy...raised strong.

In college, started fainting. My case started out very severe first year...bedridden, weak, my mother thought I would die.

Now, seven years later, I am semi-functional and really most people who meet me cannot believe that I used to be bedridden or that I have a wheelchair in the closet.

Yesterday, I walked more than a mile to stores with my daughter in the evening (women can't drive here in Saudia, and my husband was at work, and we needed to get her a dress and dress shoes). Then at night, we attended an obnoctiously loud wedding till almost 1AM. Today, I have a migraine, but I didn't faint yesterday or today.

On the other hand, I know if I start studying again, I'm going to start fainting again. And my graduate classes (program try number 2) start in the fall. I'm not afraid of the fainting though. I'm going to live my life despite this monkey on my back.

It's a long, long story in full. Anybody who is interested in the longwinded version can PM me.

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I would say that overall I am much better most days now than I was when I first got POTS. This may be partially because Ive learned to live with it more, but i think it also because my body seems to have learned to get over a pots flareup quicker than in the past.

The first flare up took nine months, the second took two months and the most recent took a little longer but it was the worst one ive had. Im still dizzy most days for a few hours but i can function ok. Migraines are pretty much weekly as well though.

The ONLY things that have ever helped my POTS are controversial: exercise has definately been the hallmark of my treatment - even if I feel like death and am fighting not to faint, I always walk every night until i start to improve. I also find that 1 and only 1 or 2 maximum vcans of light beer help me - i have no idea why and it seems contrary to what we are told about POTS but for me it works.

Florinef made me anxious, other medications made me feel worse. Licorice and caffiene can be helpful but can make me feel worse as well.

I dont expect to ever be cured or to have one of those 'spontaneous remissions' i hear about.

I do expect to improve and to learn to manage it better as time progresses and most importantly I do trust that once current research is finalised there will be far better treatments available.

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Hi Waterbaby, sorry to hear you are having a rough time. I don't post as often as I did when I was first DX but I read other posts almost everyday. I suppose I'm one of the lucky ones I take Florinef daily, 1mg in the morning, this has made a tremendous difference to my life ,which is almost back to normal. I have a full time job, can walk long distances, I can stand in shops, do housework etc. I previously have posted my progress and thanked everyone for their support, especially the help people gave in the early days, which helped me find some clarity as to what I was dealing with. I do not know how I would have survied if it had not been for the support this forum had given me. I will be forever grateful to all the members who take the time to pass on their strength and hope that one day things may get better, either by, medication which could help eleviate the symptoms or by the example of others who have learned to cope with this debilitating illness by adapting their lifestyle. I hope you start to feel some betterness in your health soon, and if that is not possible I hope you achieve the strength to cope with your symptoms.

My thoughts and prayers are with you all.

Take care

Liz B

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