Coping with long term (non life threatening) illness

for what it's worth, ronan, from what you've posted here about your illness and related issues you seem to be coping with it brilliantly. obviously, there are going to be times when you feel thoroughly shit about it: and the best thing to do then is talk, either here or to friends - or maybe to a doctor/counsellor/professional.

have you spoken to your GP about this: ie about the associated psychological issues? there are probably useful people you could talk to; your GP should be able to put you in touch. i'm a firm believer that keeping talking about these things and absolutely *not* bottling it up and thinking "ach, i'll just get on with it" is key ... who you speak to is, of course, up to you, but your GP might have ideas of people who will understand more about it than your friends (who, yes, will just want you to be well and happy again; the fact you understand how difficult it might be for them to understand is a testament to the way you're handling this whole thing!)

Another vote here for talking this through with your GP. Are you taking a number of medications for your different health problems? If so, it might be time to get your GP to review them.

I have suffered with breathing problems for donkey's years, having been a moderate asthmatic since my childhood. My own experience has been that doctors don't always want to (or have the time to) spend too long re-assessing your treatment regime and often just prefer to keep prescribing the same old stuff. Over the years I have had to do lots of research myself into my asthma and the side effects of the medicines prescribed to me, and then go to see my GP armed with the information and make recommendations to them, rather than it being the other way around.

It could be that it's the combination of meds you are taking which is making you under the weather all the time - esp if you are taking steroid inhalers for your breathing problems - and a change might go some way to sorting that out.

But I would say that NOT listening to your body is even worse. Crap as it is, you probably have to accept your limitations in order to get over them sooner. Body and brain fighting over control of 'you' is a definite recipe for depression.

Medically speaking, are you expecting to feel better after a given amount of time now you've had your operation? Have you been given an idea of what is going on in your body to help you understand why you feel like shit? Obviously I have a finite period of feeling tired and weak and a definite reward at the end of it! which makes it a bit different, but if you can look forward to a time in the future when you WON'T be sick it might help you get through the bad times. And I agree about seeing your GP/consultant. Could they provide anything to alleviate your symptoms even?

So something is obviously making it swell, at least the operation has taught me that. The problem is I have no allergies so it's a bit murky. Personally I think I have sleep apnea and this is causing inflammation, so I'm going to get that checked too. But there's no timeframe for recovery, that's the worst part, I have to just not think about the when...they can't give me a medical idea of why I feel like shit cos they don't exactly know! I know my sinuses are constantly swollen and sore but I don't know why...

My GP prescribed Xanax a while ago which does make my breathing a little easier, and helps me if I am DJing or something. I don't think I have anxiety probs, or if I do it's just cos of not sleeping right or being sick.

I am sort of burnt out on talking to doctors, having seen my GP, the ENT, an allergist, and a stress biofeedback clinic (not as kooky as it sounds) in the last year. Also despite my GP being a good man and a good doctor he can't really do much else I don't think, I honestly think you're on your own with this kind of condition, he checks all the usual stuff and then tells me if my own ideas are possible or not.

I'm in some kind of weird loop of illness, I know it's something to do with my sinuses but I have no allergies or asthma. As I say I think it may be sleep apnea doing this but that in itself is by no means cut and dried. I sometimes worry that at best I'll just have to settle for feeling "ok", and I'll never be able to say, drink alcohol again or have a late night before a day's work....

My initial reflex was to say how selfish this reaction is, but then I suffer from migraines and, I can sort of understand. I do understand how it's a shitty situation to be in because you can't escape it, you just have to grin 'n' bear it. :-( You can only moan so much before you're starting to piss people off or the *novelty* wears off.

Archel, I felt GR34T during my pregnancy (apart from the last couple of weeks when I couldn't walk two steps without having to pause and have a breather). I never had a migraine attack! Oh how great it was. Now my migraine attacks have come back in full effect. :-(

I'm assuming in your case all the visits to doctors etc have come to nothing thus far, so getting over the psychological hurdle of being constantly sick is the key. I know its had a wearing effect on my dad being ill for so long, but I think he's learnt to get through it by harnessing the good days and making the most of them, although this can have the effect of wearing him down hugely so they're usually followed by a period of sickness (usually about a week). The key is to not over-exert yourself but equally, not to waste the good days. Also, remember, you're supporting Ivan Smagghe and we're not :)

I am really sorry to hear you're going through this, Ro. There are differences in quality and quantity to the things we're talking about but something they do share in common they also share with headaches: they put an upper ceiling on however much fun you can be having at any particular moment and it's enough to make you crazy sometimes.

Like you, I'm quite weary with trips to various doctors, all of whom are as frustrated as I am by the lack of a diagnosis. I'm contantly weak, light-headed and lacking in motivation or energy. Before I completely cut out all gluten, I was losing weight despite eating large amounts of food almost around the clock (I would have a full meal before bed and wake-up at 2 am starving). Although the gluten-free diet has definitely helped (I'm no longer losing weight or feeling like I'm being erased), it wasn't the be-all-end-all we were hoping for.

I feel more contained within my body because everything I say and think and do is filtered through a body which isn't working correctly, that probably sounds weird, but if your every movement reminds you you feel shit then that's the way it goes.

I couldn't have said that better Ronan. I've always been physically active and athletic, and that has been a significant factor in my personality. Now the best I can do is a limited amount of body-weight exercises and cardio to avoid losing all muscle mass and/or get overweight. However, afterwards I'm completely spent for at least 2 hours.

Other things I can't do anymore: Way back in university I was told by numerous profs of both the History and English departments that I was a talented writer. Now I suck. Like you, I no longer drink, although I'm not the designated driver with friends because I'm too light-headed and dizzy to drive most of the time. I was a network administrator, but now I have difficulty fixing minor desktop problems on my own computers. The list could go on.

During some of the so-called good moments I often begin to question the whole illness and think I should just suck it up and get on with life. Then I try to do just that, and within an hour or two I've overdone it and it's time to lay down.

The one positive thing that has come out of my inability to do much of anything is that I decided to teach myself to play guitar a little over a year ago. I still suck, but it's one of the few things I'm able to do that doesn't generally lay me out for a few hours after, and at least I feel I've "done something".

I know all of this hasn't been of much help to you Ronan, but misery loves company, so I thought I'd share my story with ya. I sure hope your many tests start to find something that will help.

My sister was diagnosed with MS a few years ago and it has been amazing and inspirational to see how she copes with it. She was lucky to have a doctor who diagnosed it, because many people with diseases like MS or sarcoidosis go for years being misdiagnosed and misprescribed.

that approach only gets you so far, mostly I think about people who are better off, ie 90 percent of people.....healthwise anyway...

if there is any plus side to this, it's that I've never saved so much money in my life...

Ive had glandular fever before and I struggle a lot with tiredness and leg/foot pain that make simple things like shopping and walking a lot really hard, so I can totally understand the frustration, being fed up with one's stupid crappy body holding things back.

If I ever get like this, just pull the plug. Seriously.

I went to the specialist today who did my operation. He said I have chronic rhinitis. He's going to give me another allergy test as he believes a blood one is more conclusive than skin prick, so I'm praying I have an allergy, otherwise it's NON ALLERGIC RHINITIS, aka YOU ARE ALLERGIC TO AIR plus the end of my entire life....

i just feel pretty flat at the moment......not even depressed, but probably cos I don't have any less hope than I did before, or hope is kind of thrown in the cupboard along with everything else....

BAH.

it could improve by living somewhere else, theoretically, hard to know where tho...

still getting checked for sleep apnea, I may have that and getting that fixed might help me feel less tired, or put a new perspective on the nose stuff.

(I couldn't get through the spoon thing, either, Tracer. Does lupus cause logorrhea?)

(Welcome back Beth, how are you doing?)

...

I feel you, b.

i have cfs/me and can relate far too well to stuff on this thread.

bump for discussion

I realized I will not be able to work for a long time, I am sick every day. So going to an office in the near future is not an option.

Disability isn't paying the bills anymore and my family is going to take my house away, so now I have to go on food stamps so I can pay the property taxes.

To think I used to have an elite college person's job, now I'm too sick to do a job. That's okay, there is lots of talent in the big city to make up for it and I'm sure someone can do a better job.

I'm old-fashioned, believe in merit and hard work and if I'm not good enough, well then well done, champ - best of luck in your career.

I'd rather fix up old ugly houses anyway.

my family is going to take my house away

why would they do that?

Yes, I don't understand.