25 but feel 80 - help

LegacyUser

I'm a 25 year old woman and my life has gone really downhill in the last few years. I had some minor health problems which are becoming more serious and it seems like every week, I have a new condition or problem. This is greatly impacting on my quality of life and I find it impossible not to be a miserable person. I don't want to go into too much detail about my health issues, but I have a bowel disorder which means I can have diarrhea up to 8 times a day and can't really eat anything without getting bloated and feeling ill. I also have chronic cystitis, which means I'm constantly in the loo for one reason or the other. I have bad eczema on my hands which makes me self conscious, gynecological issues which mean I'm at the doctor's about once a fortnight (if I'm lucky, it can often be more) and several other things, including joint pains and fatigue. I really, really try to enjoy my life anyway but it's just getting harder and harder. I have a boyfriend of three years but we haven't had sex in over 18 months because of my medical issues. This puts a huge strain on our relationship.

One of my biggest issues is that nobody understands. I'm not really looking for sympathy, but empathy would be nice. My parents just don't get it, they think I'm a hypochrondriac and that there's nothing really wrong with me. If I bring up my health, they just change the subject. My boyfriend is understanding but I can't go on and on about it to him all the time. My friends are usually sympathetic enough but don't get how ill I often feel. If I don't go on a night out, they jump to the conclusion that I can't be bothered, rather than wondering if it's because I'm stuck on the loo or too exhausted and achey. My work colleagues are the worst - any time off work results in comments like 'but you look fine today'. A lot of them are older women and if I complain about being tired or achey, they say 'Wait until you're my age', as if they have everything so much worse than I do and I have no right to complain. I know I don't look sick. Without sounding arrogant, I'm considered pretty and am slim and am told I dress well. So I think when people look at me, they see a young, pretty woman with nothing to moan about and assume that I'm just a spoiled brat who doesn't know how well off she is.

In the past, I used to treat myself quite a bit, to help me forget about all the issues, but this is hard now, as I earn way less than I did, and so does my boyfriend. I used to feel much better when I bought new clothes regularly, or went on holiday or to a concert, but I can't afford any of this now. All my holiday time is used for medical appointments and most of my money is used for prescription costs, scans and specialists. I really don't want to come off as self pitying. I know loads of people are much worse off, and I do volunteer every Saturday with severely disabled kids, so I am reminded of how lucky I am compared to them, but I just find it so hard to be happy now. I don't feel 25, I feel 80. Even my grandparents have more energy than me. I know people would have more sympathy if they had any idea about my health, but I don't really want to talk about it, as most of the conditions are quite sensitive and embarrassing. I don't mind saying I can't stand for long cos of my bad back, but it's embarrassing to explain why I can't do long coach journeys (cos I can't cope without a loo for that long!).

What should I do? How can I improve my quality of life? How can I try to make people understand that I'm not just being a moan?

Stheno

If you are seeing the same doctor for a period of time have they not picked up on the multiple symptoms and referred you for tests to see if there is an underlying cause?

I'd start there tbh, sort out your health and you'll be much much better.

fghijkl

If you are seeing the same doctor for a period of time have they not picked up on the multiple symptoms and referred you for tests to see if there is an underlying cause?

I'd start there tbh, sort out your health and you'll be much much better.

+1

How can I try to make people understand that I'm not just being a moan?

OP you really can't i'm afraid, people generally can't really relate to an illness unless they've suffered from it themselves tbh. Forget them, you shouldn't have to justify yourself or your illness to them.
The only thing you can do is look after yourself.

As was said above I'm really surprised your doctor hasn't looked into the possibility that it's likely all your symptoms have a common cause. I know medical advice isn't allowed so i won't go into detail but surfice to say even from some of the symptoms you've listed there are definitely disorders which could account for a lot of them tbh.

I'd definitely be changing GP's and looking for a second opinion.
All the best OP

LegacyUser

Well, most of my issues (eczema, fatigue, pain) can be attributed to the bowel disorder. The gynecological ones seem to be bad luck, I've had issues there since puberty, and my bad back is the result of an accident 10 years ago. Unfortunately, these aren't issues you can just 'sort out' or fix, they're pretty long term. I suppose learning to live with them is my priority now.

LegacyUser

I know we can't give medical advice but have you considered "food intolerance" maybe try a kinesiologist. Whats your diet like OP? The gynaecoligal problems? Check out the PCOS thread in the Ladies Lounge could be of some benefit to you. I'd suggest possibly trying to keep the moaning about your health to a minimum in work etc, I know it's easy for me to say but you obviously aren't going to get much empathy from your work colleagues.

Splendour

Hey OP, as someone who has suffered for years with an undiagnosed illness- I know exactly how you feel. And like you I never look 'sick' but yet there are days when I too feel a hundred years old!
Have you looked into your diet to see if omitting certain foods will help? Gluten and dairy are huge factors in causing a lot of illnesses. Maybe you could try eliminating these for a month and see if that will help?
It is very difficult when you are going through this and people don't understand. I absolutely dread people asking me to do stuff as I never know how I will feel on any given day.
I hope you get some sort of relief soon...

Distorted

You are right in saying that you do need to learn to live with them OP. Without being patronising, plenty of people do suffer from ailments and illnesses and none of those that you have described are in themselves that serious (I know they are serious and worrying to you). But you can learn to manage your health problems in the best way. You might be surprised that a lot of people at your work probably do have their own health problems but their way of dealing with it is to keep quiet about it and have as normal an attendance record as possible. I myself have chronic asthma and have 3 bouts of pneumonia since January, plus pleurisy. Yet I don't want to be viewed as sick or ill person, so its part of my way of railing against it to not let it affect my life (within reason). I know people with cancer sometimes feel the same. The older people at your work most likely to do have their own problems (for one thing some of those women will be going through the change and that can bring horrendous problems) so I guess there is less tolerance for younger people in the work environment who are not seen as sufficiently stoic, unless they suffer from a severe recognised medical condition.

LegacyUser

Spendour, there are lots of foods I can't eat and I'm already on a severely restricted diet and meds to help me digest what I do eat

Distorted wrote: »

You are right in saying that you do need to learn to live with them OP. Without being patronising, plenty of people do suffer from ailments and illnesses and none of those that you have described are in themselves that serious (I know they are serious and worrying to you). But you can learn to manage your health problems in the best way. You might be surprised that a lot of people at your work probably do have their own health problems but their way of dealing with it is to keep quiet about it and have as normal an attendance record as possible. I myself have chronic asthma and have 3 bouts of pneumonia since January, plus pleurisy. Yet I don't want to be viewed as sick or ill person, so its part of my way of railing against it to not let it affect my life (within reason). I know people with cancer sometimes feel the same. The older people at your work most likely to do have their own problems (for one thing some of those women will be going through the change and that can bring horrendous problems) so I guess there is less tolerance for younger people in the work environment who are not seen as sufficiently stoic, unless they suffer from a severe recognised medical condition.

Thanks for your post, as your attitude perfectly illustrates the lack of understanding I face all the time. I've already said I'm aware other people have more serious conditions, but my bowel condition is actually pretty damn serious as far as illnesses go. I could live with that alone, as I'm sure you live with your asthma, but what's grinding me down is that it's one thing after the other. If it were JUST the bowel issues or JUST cystitis or JUST chronic back pain or JUST four different gyno problems etc, I mightn't feel as hopeless and exhausted.

As for the attendance record, well, that's the thing. I HAVE to take significant amounts of time off. I'm currently seeing several different specialists at the hospital and often need to see the GP as well for medication or symptoms which come up between hospital visits. Just ignoring it and going to work is not an option. My GP suggested I stop working or try to find a part-time job, but I can't afford to do that.

As for the older women, well, your attitude is their attitude. That things MUST be worse for them because they're older. They think that because they felt great and energetic at my age, that I'm just being a moan. I'm sure the 'change' isn't pleasant, but remember, I'll be going through that as well one day. If I'm this weak and tired at 25, what will 35 be like? Let alone 55. Their lack of empathy just seems cruel to me. They're constantly moaning about their kids and families, even though this is horrible for me to hear, as I might not ever be able to have children. And I always offer a sympathetic ear, I never tell them to get over it or that they're ungrateful whiners. I guess it's true, isn't it? An attractive, normal-looking twenty-something just isn't 'allowed' to be tired or sick.

The_Conductor

I can both relate and empathise- I'm not going into my medical history- suffice to say its not a million miles away from your own.

First and foremost- you have to learn how to live so that you are controlling your health (to the best of your abilities) and not it controlling you. Yes- you will continue to have regular consultant and hospital visits, visits to your GP, your back will kill you- and you need to know where the nearest toilet is all the time- but these are just everyday events for you- they don't define you.

My motto is- I live life for the good days- which I do, and on the bad days- I look forward to the next good days.

Life can throw the most awful curveballs at you- you can allow yourself to sink or swim- believe you me, I've been there.

You're not going to get particularly constructive comments from a lot of people here- for the simple reason, unless you have experienced chronic illness, its next to impossible to understand what someone else might be going through.

There is a long-term-illness forum with some pretty lively threads covering many chronic health conditions- including most of the sympthoms you've noted here: http://www.boards.ie/vbulletin/forumdisplay.php?f=862

There is also a very active Facebook group for young sufferers of UC and/or Crohn's Disease here: http://www.facebook.com/home.php?sk=group_106491930028

One of the big bugbears I have is the lack of support that the medical profession give younger people who suffer from chronic illnesses- hell putting people in touch with one another so coffee mornings could be organised where people could sit down and compare notes, or even bitch with one another should be part and parcel of helping patients- but unfortunately- it isn't........

Chin up- there are people in the same boat- who have a pretty good idea of what you're going through.

LegacyUser

Thanks for the advice smccarrick. I will look into support groups. One major issue I'm having is that it's becoming impossible for me to continue in my current job. Without going into too much detail, I have very few breaks and opportunities to go to the toilet. I've already been warned about 'skiving' off to the toilet when I shouldn't and I think I'm going to have to quit. I'm currently experiencing yet another bout of cystitis, and that along with the diarrhea means I really need access to a bathroom at all times. I'm just so down that at my age, my life is already being so restricted. I'm probably going to end up on the dole now, long term or short term when all I want to do is work and earn decent money. I've spent all weekend sitting in the house, as I was unable to go out with friends, as I can't eat out, drink alcohol and am generally feeling tired and unwell. I get that I'm supposed to learn to live with my issues but it seems impossible. My big plan was to go off to Thailand for a year or more, and that just seems impossible now. There's no way I could manage a year away from my GP and various specialists. I feel so, so, so down. I've been referred for a scan to look into the cause of the chronic cystitis and gyno issues, but it's still a month away. I'm worrying myself sick about what it could be.

The_Conductor

If you need access to toilet facilities for medical reasons- and are being denied the access you need, or belittled for using it- much as I really hate suggesting this to anyone- you are in an untenable situation, consult elsewhere as to whether you would have a case for constructive dismissal were you to resign.

Regarding travelling abroad etc- you do have medical needs that far exceed those of a healthy person- and you might not have ready access to what you might consider normal toilet facilities in Thailand for example. People do travel to these places with severe medical conditions- but you can't just put on a brave face and then beat yourself up because you have limitations that other people don't have.

Being in productive employment, earning a reasonable salary- and living life in as normal a manner as possible- are fully achievable for you- but- and it is a big but- you have to tailor you and your ambitions to recognise your limitations and to try to live as normally and happily as possible- without deliberately putting yourself in situations in which you are unable to cope.

So- a less stressful job, on a lower salary, with reasonable sick leave policies etc- might be preferable to the high powered well paid job that you may be qualified to do. What is more important to you- a big salary cheque every month along with constant stress- or a more reasonable cheque but lower stress and a happier life.........

Also- there are lifestyle issues here that you need to look at. You're mentioning not being able to go out drinking with your friends at the weekend, and being miserable stuck at home on your own. There are many many ways to enjoy life that don't necessarily involve drink. Whats to stop you and a group of friends meeting up for coffee, or going to the Bloom festival- or any of a long and varied list of possible things- that are far more attainable to you? There are regular weekly events that you could look forward to instead of going out in the evening- think of farmers markets (e.g. the market in Meeting House Square on a Fri/Sat or Dunlaoghaire on a Sun), events such as 'Bloom', the zoo, matinee cinema showings (places like the IFI have wonderful toilet facilities)- the list is endless........ The fact that you can't go out for drinks- does not mean your life is over- its an opportunity to think beyond the box to find fun things to do- that you will enjoy and that are not going to be detrimental to your health.......

Feeling tired and unwell- does tend to go hand-in-hand with a lot of chronic health conditions. Mention it to your consultant- there are lots of possible things that might be contributing to it. For example- if you have gastrointestinal problems, its possible that you may have problems absorbing vitamins or minerals that your body needs- which could be exacerbating the situation- there are simple tests that can be quite enlightening.

Yes- your appointment is in a months time. Stop worrying about what it might be- its a step towards getting a diagnosis that will help you have a better standard of living- its a positive step, not a negative step. If we all were to go around worrying about the 'what-ifs', we'd go insane.

There are positive steps that you can take now and on an ongoing basis- to change your lifestyle in such a way that you learn to enjoy living- instead of allowing your limitations rule every moment of every day for you. Even planning little local outings can be a fun thing. You have to get over the 'I can't drink', 'I can't go out for a meal' mindset- there are lots of other things that you can do- that in all honesty- are far better pasttimes or far more satisfying social interactions with family and friends- than going out for drinks etc.......

I'm not giving out to you- seriously I'm not- I am stating that you have quite a few options on how to structure your day, your interactions with colleagues/family/friends, your job, what you do with your weekend- that may not revolve around going out and getting pissed, or going to that restaurant that your friend has his/her heart set on........

Check out menupages- find a few nice local places that have food you can eat. Check out local events- find things that sound like fun. After a while you may even feel sorry for your friends whose entire lives seem to resolve around getting pissed at the weekend- when you are actually living and enjoying yourself. What will they be doing in 20 years time- while you've been out and about, explored your town/city/country, have discovered lots of fun ways to fill your weekends, have new activities that you enjoy, have friends with positive attitudes who support you, actually enjoy doing those little things in life that many people are too busy to notice........?

It is really depressing as a young person to have a chronic illness- its so easy to despair. Don't. Yes- you do have limitations that most people are lucky not to have. These limitations do not mean you can't have fun and can't enjoy yourself- simply- you may have to work around your limitations- in the process hopefully having a fulfilling and happy time........

Check out the support groups too- you will find people in similar situations who have all sorts of great ideas of things to do- and how to live their lives- that you very probably have never considered.........

Neyite

OP,
I cant identify with most of your illnesses, (and SmCarrick has given you excellent advice) but I can tell you that I suffered from recurrent cystitis. A few times a year it would evolve into a kidney infection which would floor me. I got fobbed off by doctors too, and it was frustrating and painful. Finally I got referred for a kidney untrasound - it didnt reveal anything but it was a relief to be taken somewhat seriously.
The usual things apply - cotton or breathable undies, drink lots of cranberry juice, heaps of water, wiping front to back after the loo.

The other suggestion from my GP which seemed to work is to go to the loo after intercourse, but to double void - that is pee, wait a few mins and try to pee another few drops again. It flushes out your uretha fully than going just the once. I do this a couple of times a day and rarely get cystitis. If i feel the symptoms as they begin, so I glug as much water and cranberry juice as I can hold, avoid alcohol and get it out of my system before it really establishes itself.

I think the frequency of your visits to the doctors should be of some concern to them - pester them for referrals - Your gynae issues could be affecting your bowel habits. I know at certain times in my cycle it definitely does, and overall meh health does result in you being knackered. Probably everything you go through has a knock on effect - eg gynae affecting bowel which affects hydration which affects bladder which affects kidneys which make the back and whole body ache.

neuro-praxis

I know where you are coming from.

Some things to consider:

A round of intensive counselling might help to alleviate any long term emotional problems that exacerbate conditions like bowel disorders and eczema. This, in the long term, can help more than you know.

A chat with a good nutritionist, to suggest a round of supplements, to go with a good diet. I take a multivitamin, vitamin C, B vitamin complex, cranberry supplement and pre and probiotics. I also take Udos oil as often as I can. (This helps both with bowel issues, achey joints and skin disorders.) My need for very frequent antibiotics has largely diminished due to this. Also drinking lots of water and cranberry juice helps the cystitis.

Getting good quality sleep. If you don't sleep, a short course of sleeping meds might help.

Getting regular gentle exercise, especially something like yoga.

I would consider quitting your job for 6-12 months and focusing utterly on regaining your health. It may in fact be an investment that stands to you for the rest of your life. When you are always ill, getting order and calm on your life can help hugely. Good luck.