[dlofnep]

Will see how it goes.. Got a quick re-schedule on the 16th

It's my birthday today. Wasn't feeling the best, but kept drinking beers until I drank the pain away. Had a good night. First time since last New Years.

[TrollHammaren]

Best of luck with your appointment, and hope you had a proper happy birthday!

[dlofnep]

Thanks! Technically it's today, but celebrations were last night. Shook today though!

[dlofnep]

Ok update time.

Got my test results back from infectious disease specialist. All blood tests came back clean. They weren't willing to pursue the heavy metal toxicity, even though I advised them that I had basically no other routes and that I was forced to reject a job offer on account of me not being well enough to work a 40 hour week.

They instead booked me in for a brain scan which is not for another 6 months - Not that I expect to find anything in it. Their attitude of "If your bloods are ok, nothing is wrong" attitude is terribly demeaning.

I've made an appointment with the Drummartin clinic, as they work with unexplained illnesses. It looks like it's going to set me back a few hundred in total for all my testing, if not - even more. The money isn't an issue, as my health is the most important thing to me - but I'm not financially well off, and only work 20 hours a week - so I'm going to be broke for the next few months.

I'm a little upset that the Irish healthcare system has failed me. No doctors are willing to think outside the box.

If the drummartin clinic can't identify what's wrong with me - then I'm afraid I'll be at the end of the road. I don't envisage living and feeling like crap every day for the rest of my life. It's not for me. Fingers crossed that I can get this resolved, because after 5 years of no progress - it's become too taxing for me as a person. We're only human afterall, and can only take so much.

[joebucks]

Originally Posted by dlofnep

Ok update time.

Got my test results back from infectious disease specialist. All blood tests came back clean. They weren't willing to pursue the heavy metal toxicity, even though I advised them that I had basically no other routes and that I was forced to reject a job offer on account of me not being well enough to work a 40 hour week.

They instead booked me in for a brain scan which is not for another 6 months - Not that I expect to find anything in it. Their attitude of "If your bloods are ok, nothing is wrong" attitude is terribly demeaning.

I've made an appointment with the Drummartin clinic, as they work with unexplained illnesses. It looks like it's going to set me back a few hundred in total for all my testing, if not - even more. The money isn't an issue, as my health is the most important thing to me - but I'm not financially well off, and only work 20 hours a week - so I'm going to be broke for the next few months.

I'm a little upset that the Irish healthcare system has failed me. No doctors are willing to think outside the box.

If the drummartin clinic can't identify what's wrong with me - then I'm afraid I'll be at the end of the road. I don't envisage living and feeling like crap every day for the rest of my life. It's not for me. Fingers crossed that I can get this resolved, because after 5 years of no progress - it's become too taxing for me as a person. We're only human afterall, and can only take so much.

Sorry to hear that the test you underwent are still inconclusive. It will be interesting to see what the brain scan reveals. I have not had a brain scan myself and it is something I wish to have done in the new year just to put my mind at rest that that angle is covered.

I researched the Drummartin Clinic and it does not seem like an option for me right now. Most of the tests they conduct will have already been covered by your GP so make sure you bring the results of previous tests with you in order to minimise costs and time.

I am at a stage similar to you where I have tried most ways to resolve my health problems and have almost given up on trying to find a cure and just try to manage my life the best I can within the limitations of my health. It is very hard to take especially when you see all your friends moving on, developing their careers, starting families etc but at the end of the day if you can be honest with yourself and say that you have done all you can do to make your situation better then just accept it as one of the many many mysteries of life.

Anyway take care man and I hope these current problems are resolved for you in the near future.

[kangaroo]

Originally Posted by joebucks

I am at a stage similar to you where I have tried most ways to resolve my health problems and have almost given up on trying to find a cure and just try to manage my life the best I can within the limitations of my health. It is very hard to take especially when you see all your friends moving on, developing their careers, starting families etc but at the end of the day if you can be honest with yourself and say that you have done all you can do to make your situation better then just accept it as one of the many many mysteries of life.

Sorry to hear of your problems also.

However, it is useful for people to find out what is wrong with them. I don't know all conditions but I know that how one might manage ME/CFS/Post-Viral Syndrome (which is what I have) is not necessarily the advice that would be given to somebody who doesn't have the condition (it could be the opposite in some ways) - my condition (and long-term health) was damaged by not being diagnosed quickly and following advice that wasn't suitable for somebody with ME/CFS/PVS. This may be the case with some other conditions as well.

[dlofnep]

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.

[joebucks]

Originally Posted by kangaroo

Sorry to hear of your problems also.

However, it is useful for people to find out what is wrong with them. I don't know all conditions but I know that how one might manage ME/CFS/Post-Viral Syndrome (which is what I have) is not necessarily the advice that would be given to somebody who doesn't have the condition (it could be the opposite in some ways) - my condition (and long-term health) was damaged by not being diagnosed quickly and following advice that wasn't suitable for somebody with ME/CFS/PVS. This may be the case with some other conditions as well.

Cheers Kangaroo. I have seen many different doctors and received a few different possible diagnoses. Some doctors reckon it is ME, others have called it PVFD, another reckons it is PTSD and others have suggested it is a genetic disposition. So an exact diagnosis has not been reached and it has been trial and error for me in what benefits me. I will continue to persevere to attain full health but I have quite low confidence in the health system. Thanks for your concern. I hope you will see some improvement in your condition in the near future.

Originally Posted by dlofnep

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 hope they can shine some light on your problems and I look forward to hearing how you go. Unfortunately the reviews of Drummartin Clinic has been mixed so far so hopefully they can help you out.
I can feel your frustration at the situation. It really is a nightmare however alternatives however the alternative to carrying on is even grimmer. If you were to receive a diagnosis of just say MS or possibly even a brain tumor would your outlook on the future be the same? Also doctors may not have the ability to diagnose your problem at present however that does not mean in 5-10 years a solution will not be available.

[dlofnep]

I'll let you know how I get on.

They test for heavy metal toxicity, so that's one thing I'm very keen on crossing off my list - as I became ill very shortly after getting fillings for my first time. If I'm wrong about it, as least my mind will be clear.

[kangaroo]

I would urge anyone considering taking their own life to get psychological support of some sort e.g. counselling - perhaps ideally a counsellor who has some experience of dealing with patients with ill-health or disability.

It is quite possible to have a meaningful and enjoyable life despite having a long-term illness. It might not be exactly the life one had planned of course and may require a change of perspective.

Also accepting one has a long-term illness doesn't not necessarily meaning one has given up hope that one's health will ever improve (which perhaps could be summarised as "accepting one has long-term health problems does not equal giving up"). And just because there may not be a cure for a health problem at a particular time does not mean one's quality of life can not improve with the right medical and other supports and management.

[_Whimsical_]

Originally Posted by dlofnep

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.

[dollyk]

may seem strange , but ny husband got ill about 4 years ago
turns out he was allergic to the plug ins i was using about the house.
maybe not related to your symptoms, but who would have guessed.
He was ill for ages and someone suggested it was something in the house.
I started to eliminate all my cleaning products, and last to go was plug in air fresheners, oh and in his car too...mad or what ?

[kangaroo]

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).

[dollyk]

have you had your boiler cleaned, and chimneys and gas fires, stoves checked

[WildOscar]

Originally Posted by kangaroo

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

There is a psychological aspect to CFS, even Dr Weir says so.Stress can make fibro and CFS worse There is a psychological aspect to all illnesses