How to help?

[Raven321]

Hi guys I'm still waiting on my results from the doc at the moment. However my friend who suffers from PA and coeliac disease is not feeling well at all. I have called and always offer help but as this makes it worse somehow I'm left feeling quite helpless

has anyone ever been in this situation? Or maybe in the opposite and something really helped..any advice would be appreciated. Do older people think really differently compared to much younger people when asking for help or sharing their pain?

[Gambit62 Administrator]

when you say they are not feeling well at the moment is that physical or psychiatric or a mixture of both.

A b!2 deficiency can have a severe impact on your mental landscape - it certainly affected mine - and made social interaction very difficult. On the depression side people generally just made things worse when they tried to help - what did help was where people would just be there and would listen if I wanted to talk or just be there if I didn't. There was nothing worse than people trying to understand when I just didn't feel I could communicate effectively.

[Raven321 in reply to Gambit62]

It's a mixture of both I think. You're right but I can only try to understand and help if I'm asked. I jut hope I am asked when and if needed . When someone is so closed up emotionally it's extremely hard for someone trying to help them. Life and illnesses has made my friend very bitter and is so negative about everything. I wis my I could wave a magic wand and fix it all

[Allyson1 in reply to Gambit62]

Well said.

[Polaris]

Hi Raven.

It's very natural to want jump in and help when you see someone struggling but, as Gambit has said, usually the very best thing you can do is just be there and listen.

B12 def. symptoms are so varied and generally misunderstood, especially some of the more serious symptoms - anger and paranoia, even delusions - often making it very difficult for friends to understand. My gentle, loving, fiercely independent, sister occasionally has these symptoms but this is the nature of the disease. We've have found it best to distract in some way, with gentle humour if possible, speak very calmly and, though hard, try not to take anything personally.

[Raven321]

Thank you so much for taking the time to read, understand and respond. Appreciate it

[clivealive Forum Support]

I went through a very bad patch in 1974 a couple of years after I'd been diagnosed with P.A. I was OK with colleagues at work but "struck out" mindlessly at my wife and two pre teen daughters - the worst of it was I felt so useless and a complete failure to those I loved the best.

Perhaps it was all down to anticlimax. Following gastric surgery for the removal of two thirds of my stomach in 1959 by 1968 I was a physical and mental wreck not knowing what was wrong with me and being fed antidepressants, valium, tofranil and librium plus powerful antacids. My doctor sent me for a Schilling test which proved negative.

Ironically it would seem that the shot of B12 given during the test "perked" me up sufficiently to get me through a Government retraining scheme for registered disabled persons in 1969/70 and I got a job as book-keeper to an international company and things were going well.

In 1972 my health was in decline again and I was sent for second (unheard of) Schilling test which this time proved positive for P>A. and I was started on cyanocobalamin 1000mcg every four weeks for the rest of my life. I was literally "walking on air" as I left the surgery that at last it was known what was wrong with me

In 1973 We moved house from a maisonette to a three bed semi because the girls were growing up and were becoming too noisy for the downstairs neighbours.

Then along came 1974, That year saw the miner's strike, the 3 day week, wage freeze, threats to employment and to cap it all negative equity on our new home.

I retreated into myself and if it hadn't been for my wife Valerie's "patient endurance" and not asking me "What's wrong with you?" but making an appointment for me with a hospital psychiatrist that did the trick.

I was OK with "strangers" and colleagues but just couldn't bring myself to admit my feelings of failure and inadequacy to my family and Church members.

I guess we are all subject to the peaks and troughs of our "biorhythms" but thankfully I've never fallen into a similar state of depression again even when Valerie died in 1992.

[Raven321]

Gosh! You've been through a lot! You're post is touching and I thank you for sharing you're story with us, it gives us all hope that things can be managed and you can live a life if you have patient friends and family. Thank you Clive. Sometimes I just feel so so helpless and don't know what to do or say so I turn to this forum for advice and many good people like yourself take the time out and give their opinion and insight. I guess everyone deals with things differently some people just shut down and don't allow anyone in. I'm lucky at least I can be there for my friend and I'm not totally shut out. That would be hard to deal with. Thanks again

[clivealive Forum Support in reply to Raven321]

Four years after my first wife's death I met Gill as she was on the checkout at Tesco. She worked out that I was single, living alone with a cat from my purchases (sausages, chips, eggs, minichips, mars bars & kite-kat) and I could see she had no wedding ring on her finger. She looked so sweet and demure that I began deliberately joining her Friday afternoon queue and decided in my mind "I could live with that".

Come Christmas 1995 I bravely put a card on her "worktop" which said:

Now in this season of peace and goodwill,

It's time to remember the girl on the till.

She chats as she wraps and she tots up my bill,

And although I'm not certain - I think her name's Gill

Eventually I plucked up courage to ask this (then 46 year old young lady - the same age as my late wife Valerie when she died) to go out for a meal which was accepted "no strings attached" and the rest is history. In the true Tesco tradition of "Buy one - get one free" when I dropped Gill home after the meal I was introduced to her 19 year old daughter Zoe, whom Gill had raised single handedly for 14 years after her husband deserted her for another woman.

I had 27 happy years marriage to Valerie and Gill and I celebrated 20 years last month so yes, I have been well blessed during my life despite my chequred health and I'm still "clivealive" at 75.

[Allyson1 in reply to Raven321]

You are a good friend to care.

I think sometimes people shut down if they are afraid of judgement or dismissal. With chronic undiagnosed illnesses there is often a grieving process and it can be overwhelming. When wellmeaning people want to jump right in with solutions, it can feel like dismissal, or it can be stressful trying to respond to advice that isn't really knowledgeable.

I think a good starting point is listening, patience, and caring. If a person knows they are cared for and will be listened to, they can open up more easily.

[Raven321 in reply to Allyson1]

Thank you

[pugdogs10]

Hi...maybe you could refer your friend to this web site, its often easier to confide in people in this way. It has been a great source of reassurance and information to me and lots of others. Good luck and keep "being there" for your friend.