Lindsay

Age: 56
Location: Elephant and Castle

I’ve always been struggling. 
At times I just felt an overwhelming sadness about things. 

Lindsay

Age: 56
Location: Elephant and Castle

I’ve always been struggling. 
At times I just felt an overwhelming sadness about things.

I was born in Dunedin in New Zealand. When my mother died, my father and I moved up to Christchurch to be with my grandparents. Dad had ill health. He had mental health problems himself. 

When I was 23, I decided to travel a bit. I actually spent a couple of weeks in Tokyo on the way through to Europe. I’m pleased I saw Yugoslavia, that was lovely, and Bulgaria. I quite liked the 'out of the way' places. In England, I’d much prefer to go to see places like Jarrow than Madame Tussaud's. I ended up working in London and I’ve been here ever since.

The place I enjoy most in London is Lord's cricket ground. I like walking beside canals, and the parks are great.

I enjoy walking as a way of keeping myself fit and active. A by-product of the granulomatosis I have is that it can destroy lungs. It does make you breathless, so the walking helps with my fitness. It’s a nice way to get around.

The first time I got unwell, the first time I was diagnosed, was with depression, in about 1996 or 1997. It had probably been going on for quite a while. You know, I’d probably had the condition for many years, since my late teens, early twenties, and it wasn't until I was 35 or 36 when it was diagnosed. 

Health-wise the next thing that happened was the granulomatosis. I had been struggling along with shortness of breath, and I’d almost collapsed a couple of times. At one stage I thought I was having a heart attack, and I went to A&E. They thought it was cancer for quite a while because it was the same symptoms. I had several biopsies. That was fairly dispiriting. 

Finally I was diagnosed with Wegener’s, which they now call granulomatosis. I’m in remission from that at the moment, but I was told it always has a 50 per cent chance of it recurring. It took quite a while to get it under control, because everything they tried just didn’t work. A couple of the drugs altered my liver functions, so I went to a liver specialist a few times. 

I think the hearing loss had been happening over a number of years, just the same as the granulomatosis. They said it could be one of the symptoms of the granulomatosis. It has made life very difficult, but you just have to get on with it. 

One of the by-products of the granulomatosis is Type 2 diabetes. Not that it caused the diabetes, it was just a reaction to the vast amounts of steroids that I had to take to combat the granulomatosis. As a rheumatologist said, it’s the lesser of two evils.

I manage it diet-wise now. I was on insulin for a while - that was when I was on a high dosage of steroids. I’ve actually become quite strict about what I eat. So I don’t look upon it as a problem, although I do sometimes have a craving for chocolate Hobnobs.

In addition to his other conditions Lindsay has hearing loss

In addition to his other conditions Lindsay has hearing loss

I used to binge drink and I used to go out and have a large quantity of alcohol at various points in time and then give it up for about three or four months.

Then have a few weeks of going to the pub every night of the week.

I’d always done it because I think it was a way of making me happy.

I’ve always had a general lack of confidence, the depression hadn’t been diagnosed until I was about 35 [or] 36, so I suppose it was my way of coping with the depression.

I didn't know what was going on with me, trying to cope with some sort of sadness, and if you're stuck in employment that you don't like, even though you're very good at it, you tend to think, oh, it's just a way of coping with that.

ME & MY TREATMENT

I keep a list in case I go to the hospital and they say, ‘What medication are you on?’ I just give it to them, or occasionally when I’ve had to go in an ambulance, sometimes I just forget them. 

I take an antibiotic for prevention of lung infection. 1 tablet on Monday, Wednesday and Friday.  I take one steroid tablet for my granulomatosis every day.

I also take a tablet for gastro-oesophageal acid reflux caused by the steroid every day.

And for bone thinning. I take one tablet on a Sunday and another tablet twice a day.

I take one tablet every day for Cholesterol, and also an Iron tablet each day. I take an antidepressant every day too.

I use inhalers to open up the airways in my chest, and I do daily exercises and walking.

Lindsay enjoys gardening

Lindsay enjoys gardening

I put a couple of six kilo weights on my shoulders and do about 50 sit-ups and sit-downs with those. I’ve got a kitchen step I go up and down on that about 150 times in the morning. It’s just part of pulmonary rehabilitation and going out for brisk walks. It helps the diabetes as well.

My diet basically is almost a vegetarian diet. Say for breakfast I have something like branflakes and muesli, and wholemeal bread. Branflakes and muesli, that’s interesting. It’s the sort of stuff you’d give to a horse, but they say it’s good for you. Yeah, the jury’s out on that one. In the evening mainly it’s just vegetables, like, I don’t know, beans, pulses, carrots, peppers, courgettes, things like that. That’s mainly the diet I have. 

I’ve had a great deal of help from the NHS. I’m very lucky. I have a very fine GP, so I’ve been quite switched on to all my conditions. They’ve always been there on the end of a phone. They’ve always been there with advice, and if I have a relapse it’s dealt with quickly. 

All I do is phone my GP and she makes the time, she gets me booked in virtually straightaway, and then we move on from there and contact the relevant departments for me.

I'd like a job, something to do, something I enjoy doing, some sort of ability to be content, that would be nice, but no great hopes, no great plans.

Watch Lindsay's story.

I don't like the words 'battle' or 'brave'

It's just something which happens. You just have to cope with it. No-one's going to wave a magic wand and take it away.