Undiagnosed circle of hell.

Hi OP,

That just sounds awful - I'd really like to hear how you're getting on.

I'm not going to throw any potential diagnoses at you, or start asking questions that I imagine enough doctors have covered a millions times - there's nothing worse!

You mentioned that you're not entitled to Disability Allowance due to a lack of a clear diagnosis, but to what extent have you explored that avenue? There's a sample application form on the citizeninformation website http://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_allowance.html and it does ask for a diagnosis as per the ICD10, but there is a section for your doctor to give details. If they reject it on the grounds of lack of medical evidence, you may be able to appeal it. I'm sure your doctor can verify that although medical investigations have come up short, the symptoms of this unknown illness significantly impede your ability to carry out your work to the full extent.

A welfare officer can deal with these things on a case by case basis (I was granted Orphan's Allowance despite the fact that both my parents are still alive - it was a case of proving parental abandonment, which was difficult to do). I would encourage you to give it a try, as it would mean that money would be one less thing to worry about.

I hope this helps in some way, and I wish you the very best of luck with your health.

dlofnep wrote: »

I'll be sure to bring my results with me. They are going to cover many things that I have not yet covered - which they explained on the phone. The way I see it is it's worth a shot. I'm certainly not going to accept this as a lifestyle. I think the only thing that will get me through this is persistency. If I get to the point where I feel like I've done everything humanly possible, then I'm going to call it a day. I only want to live if life is worth living. Right now, it isn't. You'll have to forgive my honesty as I'm not doing it for sympathy. Just need somewhere to vent.

I can understand what you're saying and I think a lot of people who have faced long term illness and the endlessness of it have felt the very same. Particularly when you're waiting in limbo with no diagnosis. It's like searching for a release valve somewhere and when you can't find one ending it all can look like the only way out. But what Kangaroo has said is true. You do learn to adjust to physical limitations in time and you do find richness and value and happiness in life again. If you look around you find lots of people are adjusting everyday to all sorts of circumstances they'd never have chosen for their lives and they manage. It's a painful adjustment but it's one very much worth trying to go through and you are a more empathetic and stronger person for doing so.

In my own experience I had been ill for a long time, got well ,was ecstatic and then had a very severe relapse a few years ago. I was devastated by it and became completely fixated for a while on somehow getting better again. I was reading up about it all the time, going to every doctor under the sun & hearing the same thing from them all. I did things I'd never normally have time for. If someone had a religious aunt with a relic of some "healing" saint or other I was suddenly all "bring it on!"...a few years before I'd have rolling my eyes.

I was in a constant state of either so sick I could hardly roll over in bed or I was a little better, well enough to sit up a bit, and using that extra energy draining myself being hysterical thinking about life 6 months down the line and how I wouldn't be able to bare it.Any strength I had was used exhausting myself going to Drs who were all telling me they couldn't help. I fully believed that spending every moment trying to fight my way out was the only and best option. In the end it wore me out completely and looking back now I regret the level of intensity I devoted to it. When I finally had no more to give I realised that all I could really do to help myself was the small day to day things like try to stay as calm as possible and not be thinking 6 months or a year down the line so I didn't go mad. I also found it helped keep my body in a relaxed state where it could heal, not even nearly fully, but certainly it helped a bit.

If you tell yourself "if this doesn't improve I'll kill myself" you're putting yourself in a life or death situation. That is way too intense for someone who is well not to mention someone who is sick. It's impossible for your body to heal at all or recover at all in that place. It will make you worse even though it might sometimes feel like a comforting thought.

Go to your next appointments and if there's no answers there then try and sit back and let go a bit.Try and eradicate the activities and stresses that are making your life a struggle right now. Get your shopping delivered from online instead of going out for it etc, all the small things. Give it a little while, a few months, of going with what your body wants and not thinking about the future and just see if it helps you physically. It will help you psychologically to cope & you'll be in a stronger place to look at things then. Accepting things for a while is not giving up on getting better. Time, rest and relaxation heals things you don't expect, medical science moves on over the course of time & makes unexpected breakthroughs. There is a lot of genuine reason for you to be hopeful. Don't be the one to rob you of a future. Your answer might not be here now but you don't know that it's not only months down the line.

And you aren't alone in feeling this way. It's a dark place but others have been there and come through it and you can too. A counsellor is a very good idea. Someone you can share these thoughts with and vent to and who might have ideas you haven't considered to help you cope. You owe it to yourself not to give up.

By the way, some people may feel that going to a counsellor is accepting one has some sort of psychological problems.

However, there is another way of looking it (which I prefer): if one has long-term health problems which are currently affecting one's quality of life, and perhaps might do so for a while (or more) into the future, it is like grieving. It would generally be considered "normal" to grieve after, for example, the death of a spouse/partner or parent (for example). Similarly one can grieve for one's losses due to ill-health. But just as one's life doesn't have to be over after a death of a loved one (one sort of loss), similarly one's life doesn't have to be over if one is not in full health (another sort of loss).

Dr John McKenna in Naas might be worth checking out.

Hi,
Just wondering if there is any update on your progress and to see how you got on?

Hey OP, thanks for updating, it's good to hear from you again.

Did you go down the road I mentioned earlier? I mean filling out the disability allowance application form with a doctor's note detailing that you are showing definite symptoms of an underlying illness but that you haven't been diagnosed with anything. I'm sure you wouldn't be the first person to have a debilitating illness that hasn't gotten a formal diagnosis.

As I said before, these things aren't set in stone, so I would recommend getting a letter from your doctor, filling out the disability allowance application form, and see if they'll accept it. If it's rejected, you can request a meeting with the local welfare offices and explain your circumstances. Although it's not the same thing, I had problem with my orphan's allowance but was able to secure it in the end.

It's definitely worth checking out.

Have you ever been tested for lactose intolerance? I think if you're having such good success by cutting out certain foods, you should definitely try a serious elimination diet. But sounds like you're doing everything possible to get to the bottom of this, hopefully you'll get to it real soon. Fingers crossed!