feeling alienated

[kassie]

Hi i'm new to this site, I have suffered from recurrent kidney infections and pain since i was a teen, im now in my thirties, and just recovering from another bout and recent biop, it is very hard, constantly having to watch my diet, not touch alcohol, i have even been put on homeopathic remedies which although very worthy have not really helped , shame, and when people ask you why your off work, its annoying to have to explain, as it seems that without the aid of a plaster cast or some scars ( which i have only they are internal) people can seem very narrow minded ( your obviously just a malingerer) I am informed that i may be facing future kidney failure, and its nice to know that sites like this exist, for shall we say disheartened individuals like myself, suffering from tiredness and generally feeling very uncomfortable, and that i am not alone, so thank you, and its been very life affirming to read some of the messages kassie x

[JMan]

Hi Kassie

What you describe sounds familiar to some of the experiences I've been through (and I think many on this site) Kidney problems are in the main an 'invisible' problem to the general population, and thus misunderstood a lot of the time.

I've had kidney problems since childhood and am now approaching my 30's.

You certainly learn a lot about people as you go down this road.
I'm lucky that I have some true friends who I can rely on.

Welcome to the board

[amanda in CA]

Hi, Cassie, I understand your feelings. From my late teens/early 20's I was training as a nurse. I used to feel really ill in the mornings, nothing specific, just not well enough to go to work. Since it was so vague, I would phone up with all sorts of 'bona fide' illnesses. I was nearly put back on my exams because I maxed out on my illness days allowed during training (I knew that I had reached the maximum but a clerical error added a day). I had a pretty strong feeling that I was branded a hypochondriac with the people I worked with. After qualifying, I went to work at a private hospital in London and again, had a lot of sick time. I well remember on one occasion, one of my colleagues who I didn't particularly get on with came up to me and said 'what were you off with this time?' How could I explain when I wasn't sure myself that I wasn't just someone who was malingering, since this unwell feeling became such a regular part of my life. Concurrently with this, my haemoglobin started to become low. I went to give blood and it was refused because my Hb was too low. A blood test was carried out and the results were sent to me. Being a naturally inquisitive person, I opened the envelope and the result stated 'burr cells, ? chronic renal failure'. From then on I never had a normal Hb. Tests carried out by my GP failed to reveal a problem with my kidneys (I later found out that tests for urea and electrolytes only show a problem at a late stage, and he didn't do a creatinine clearance which would have revealed a problem). However, my low Hb was attributed to heavy periods and I was on iron tablets constantly for 3 years before I moved to Hong Kong at the age of 24. From then on, things got progressively worse. I was undergoing gynaecological tests for infertility and the consultant seemed pretty concerned about my raised blood pressure and the blood picture that was showing up on my results. They did not resemble a normal iron-deficiency anaemia and he suggested that I get my blood pressure monitored at the medical center. This I did and was told that there wasn't anything wrong with my blood pressure. Month after month I went for a blood test, and month after month my haemoglobin got lower. No-one suggested doing any tests. At the end of 1989 my husband and I took a trip to New Zealand and when walking up from a waterfall, I was stopping every few yards to gasp for breath. With an Hb of only about 7, it was then that I decided that I needed to demand that this be investigated. As we were imminently going to move to Cyprus, I thought that I would wait until I got there and then set things in motion. However, when I expressed my concerns to my gynaecologist, he said that he thought that even with only two weeks remaining in Hong Kong, that I should have immediate investigations. I had a number of tests done including creatinine clearance, the latter revealing that I did indeed have chronic renal failure. It all came as a complete shock, although I had had a niggling, but unconscious or ignored feeling that something wasn't right, ever since I had had the first blood test when I had first become anaemic. I think that it was also somewhat of a relief, since I suddenly felt that I had justification for all the sypmptoms that I had been experiencing. How I would love to have got together all those people who doubted me and spelt it out to them how unfair that they had been to me. I did get the opportunity to do so to the stupid Lieutenant Colonel at the med. center who had more or less come out and said that I was a hypochondriac. Seeing that pompous oaf grovel was very gratifying. Anyway enough of my ramblings, you have friends and understanding people on this website who will never belittle anything that you tell them. For the people that don't seem to understand, maybe a few leaflets from the British Kidney Patients Association explaining the facts about renal failure, casually left where they might find them, may lead them to being a little less judgemental. love Amanda

[kassie]

Hi, its very good to hear that im not alone, i am currently awaiting more test results, so im sure that will alay some of my fears, and it is so true that you do worry when the problem is hidden, but its hard to shake the feeling of being helpless and feeling useless ( i have been off work now for months and it has made doing my job very difficult, i am a teacher) my problem is that despite having good friends, i am reluctant to talk about all my health probs, not ever wanting to be the one with the weak health, i just want to be normal, and its hard being out with friends and not being able to drink or eat all the things they do, and feel very tired and subdued on occasions,(hard because im naturally a really outgoing and upbeat person) i guess thats just my hang up, that said my friends are great, and the family are supportive, but i im human and i do get times when sadly i think why me? what on earth did i do to deserve this whats the future going to bring, am i gonna get married and have kids without more probs or even find someone who will take me on with all the potential problems im gonna face, but like i say im only human so i do worry, ...life has a habit of suprising you i guess kassie xx

[JMan]

Hi Kassie

I'm 27. I worry about the same things, sometimes, on the 'down' days. Somehow I survived my secondary education on dialysis, went through university on a fluid restriction so I AM very familiar with that feeling of how it feels to stand in a bar without a drink in your hand (you feel socially nekkid in some way! LOL !). You are quite right, people CAN be very narrow minded as they expect YOU to behave with what they are familiar with.

I wonder if I'll ever meet someone able to put up with my 'background' of medical stuff, and see past that to the whole of ME.

These are all natural thoughts for someone in that sitution. One of the most relevent quotes I heard recently was this:
"Kidney patients are normal people in very abnormal situations" His point being that society itself needs to make some adjustments (he happened to be a social scientist). However I do like Amanda's suggestion.

The National Kidney Federation do a VERY good series of leaflets (call their helpline details at: http://www.kidney.org.uk/main/helpline.html

The NKRF (different organisation) do a series listed as "What I tell my... about kidney failure" aimed at Employers etc.. again contactable online or by phone.www.nkrf.org.uk

Everyone wants to be 'normal' and I think most here have gone through that phase of not wanting to talk about stuff to those who aren't familiar.

On a good day I can think of what I've been through as a very life building experience, something thats given me skills and strength. On a BAD day, I feel pretty helpless, useless and alone. Its very much 'swings and roundabouts'.

I think that IS normal, those people don't share your frame of reference or experience. Hence the existence of boards like this one, the chatroom and other groups like the NKF etc. they all provide somewhere were people have NO problem with you talking about stuff if you want to or not.

That fear of 'not knowing' is often worse than the actual facts themselves.

Best advice I've got from here is to LEARN as much as possible and NEVER stop asking questions:D

On the friends thing.. Kidney problems can be testing of friendship, but if they cannot stick by you when you are not 100% then.....??? Its certainly taught me to at least TRY and be tolerant of people (I don't say I always succeed but I try )

Take care, keep in touch

J x

[LadySycamore]

Hi, its very good to hear that im not alone, i am currently awaiting more test results, so im sure that will alay some of my fears, and it is so true that you do worry when the problem is hidden, but its hard to shake the feeling of being helpless and feeling useless ( i have been off work now for months and it has made doing my job very difficult, i am a teacher) my problem is that despite having good friends, i am reluctant to talk about all my health probs, not ever wanting to be the one with the weak health, i just want to be normal, and its hard being out with friends and not being able to drink or eat all the things they do, and feel very tired and subdued on occasions,(hard because im naturally a really outgoing and upbeat person) i guess thats just my hang up, that said my friends are great, and the family are supportive, but i im human and i do get times when sadly i think why me? what on earth did i do to deserve this whats the future going to bring, am i gonna get married and have kids without more probs or even find someone who will take me on with all the potential problems im gonna face, but like i say im only human so i do worry, ...life has a habit of suprising you i guess kassie xx

Hello kassie.

I feel what you are saying. We are all works in progress. Constantly changing and growing. And I won't sit here and lie and say, "This too shall pass" because it won't. I know b/c I've talked to enough people who have dealt with kidney issues all of their lives, and they still have bad days (or at least not-so-great days). It's natural to have those days. I "love" the way people say, "live your life as normal as possible" but how we are living isn't even close to "normal" by any means, so I suppose this way IS our "normal".

Remember: information is power. The more informed you are, the stronger you'll be. Get educated on anything that you can get your hands on regarding your situation (once you find out the results of your tests). And also, feel free to ask as many questions of your doctor as you see fit. Don't feel like "Oh I'm asking a dumb question" or "I'm being a bother". Too bad if the doc doesn't like it: you have the ultimate right to know about your health and making a decision about what kind of treatment you feel comfortable with.

Good luck!