Somebody else who comes to this website who’s got multiple health problems, they might have problems coping, they might be worried about the future, what advice would you give to people who are in the same boat as you are?

That’s a difficult question, isn’t it? Because everyone is an individual. But basically, don’t keep it to yourself. Talk about it with your family. Make sure people who should know do know, and they know what likelihood is gonna happen or what progress could be made, what you can and cannot do, rather than pretending that you can do things that And try to work out what the progression is of your multiple problems. What is the What is gonna give you the most problem? Because that’s what you need to sort out first. And try to find the And for that, look on the internet, find support groups. Not just in this country. And you may or may not feel that you can talk to other people who have the problem. Because people who’ve had the problem, particularly ones who’ve had it maybe longer than you have, lived with it longer, may well have a solution, or a coping mechanism that will help you. And you don’t need to invent the wheel. Yeah.

And the consultant for my chest, he recommended that I joined something called Breathe Easy and it’s a social club for people with chesticles, like myself, of all types, and some of them are quite a lot worse than I am and have to carry oxygen bottles around with them and so on. They haven’t all got COPD. They’ve got other things as well, well, different things, lung things, bronchiolitis or something is one of them. So meeting them and realising that I’m really not too bad after all was quite good, and also we do lots of things together. We go out for a trip on canals springs to mind from last year. They’re going to an arboretum at the beginning of May. They hold Christmas lunches and other lunches at pubs and so forth and it’s quite good and we have lectures from doctors. We have talks by consultants. We have the local respiratory nurse team come in and talk to us, and it’s a monthly group and I’ve recommended it to various friends of mine throughout the country, who have problems with their chests and said, you know, Find a branch near you because they’re really, really good. And ours is excellent. I was there yesterday and we were doing a games afternoon. It was being run by Age Concern or Age UK, as they call themselves now, and we were all doing curling and skittles and, [coughs] excuse me, [coughs] on a Wii machine balancing on tightropes and things like that. It was really good fun, so if you get the opportunity to go to one of these clubs it would be really good for you.

What messages might you give to somebody else who might be living with more than one condition?

Well, same as any other I suppose, keep all your, make sure you keep all your appointments and listen to what the consultants are saying, take all the medication they prescribed and get on with it, sort of thing [laughs]. I mean I’m of the opinion that there’s always other people worse off, you know, so let the doctors try and sort them out, you know.

Have you got any messages for other people trying to live with multiple health conditions, or for the carers, or their family, about what they can do, how they might be able to cope, things like that?

I think, from the point of view of the patient who’s got, multiple health conditions, I think you have to accept that it’s your body, and it’s your responsibility. I think you have to make yourself as well informed as you possibly can, and the information is out there. I think you do have to be sympathetic towards thethe medics that you come into contact with, and you do have to try and get a relationship with them, whereby you are both working together for the same ends. so, going in and stamping your foot and shouting the odds isn’t going to get you anywhere, you need the medics to be on your side, and I think you need to work at that.

But, I think you have to put some effort in, and I think you have to look at your own diet, I think you have to look at your own lifestyle, I think you have to look at things like nutrition and exercise. And I think you have to be aware of other techniques of coping with chronic pain and fatigue. So, you know, look at alternative therapies, look at things like distraction techniques, so if you’re busy and you are doing things, it takes your mind off the fact that you’re very tired, or you’re in pain. Really basically you’re not probably going to be cured, you’ve got to accept that, but you’ve got to make the best of your life that you can, and only you can do that. You need help from the medics, in terms of treatments and therapies and medication, but really it’s your responsibility.

Could I ask you for any advice or messages you might have for other people who are living with more than one condition?

Just get on with it really because you get you get the medication from your doctors and I’ve often said, it depends on impression. If you’re a wimp, you’re always going to be a wimp. If you’re just going to accept it and get on then that’s the only way forward really is to keep on trying but also, on the other hand, know your limitations as well. But you you’ve got to try. You mustn’t give up.

Would you have any messages for other people living with multiple conditions? So that might be with the conditions that you have or with other combinations.

I think firstly, I’d say to them, it’s not the end of the world really. I think it can feel like it, and especially if you’re young when you’re diagnosed with diabetes, you just think, you know, the world’s ended, everything has changed, everyone is going to look at you different. And it’s sort of, you feel like it’s going to end but it’s not going to end and people aren’t going to look at you differently and if they do, you just ignore them really because they’re not worth your time.

Okay. Great.

Yeah, and, you know, there might be roadblocks on your way but, I mean I was given a great piece of advice from my paediatrician, when I was diagnosed, and it was you control the diabetes. It does not control you.

That’d be what I’d say to someone with diabetes. I think again, with the epilepsy, it’s, you know, you control it. If you can get onto the right medication and keep open communication with your neurologist, then it can be very well controlled and you can go on and be very successful and you can, you know, eventually get, you know, your driver’s licence back if you have to give it up for a year.

You have to recognise your age. You have to recognise that you have certain difficulties and adapt your life around it. You can’t simply go in and have two stents and so on and come back and say nothing has happened. Whether they will cause any stress or damage you don’t know, but it’s always in the back of your mind because very much like you sit in a clapped out car and you know that there’s limitation. You know, it’s pointless putting it on a motorway and putting your foot down knowing that it is just not capable of doing that, and I think that applies with your own body as well. Simplest way I can put it.

If I could ask you any messages that you might have for people that are living with more than one condition, what might you say to them?

Well, anyone that’s just starting out with diabetes, just look after yourself. Really, really, really, really take care because it affects so many parts of your body, you don’t realise and when you’re when you’re thirty, you’re think you’re indestructible, and because I didn’t look after myself at the beginning, I’m sure where a lot of these problems have started from. And I don’t think people realise how it gets you down, one thing after another after another seems to knock your spirit, and I suppose the only thing I can say is keep your chin up and keep fighting.

What messages might you give to other people who are living with more than one condition? Do you have any advice or messages for them?

Oh, just be careful in what you do, you know, and do all the obvious things. If you can reduce your weight, especially from a diabetes point of view, if you can reduce the weight, then reduce it. I wish I could. I keep trying and trying and it has no effect whatsoever, which is a bit dispiriting, but, you know, that’s the way of, certainly do that

and also, you know, with the diabetes, watch what your sugars and things are, you know. I know it’s hard but I have this little phrase that there has to be some joy in life. That’s why I have my little bit of choccy [laughs]. You can’t wipe everything off the slate, no, just, you know, be sensible be sensible, that that’s the word.

I’m just interested if there’s a couple of tips

Right.

coping strategies, advice around anything that we’ve talked about that you would give to other people?

Well, Iyeah, I think in relationship to the health issues, you know, it’s a minefield that, you’reyou’re noteven I who have got experience is not really getting through that very well, but you do need a really, really good GP who, you know, is your advocate really. The person that will sort things out clinically, medically for you, and if you haven’t got one, then you need to find one and if that means that you need to go to a GP up the road and say, I want to sign on, then that’s what you do, because, without a good GP you really are lost, you can’t get through to, someyou know, it’s unfair that I have four consultants looking after me, and I have to say that they’rethat, there are two of them that are really, really easy to communicate with, you know, are not defensive in any way, but consultants, like all of us, they’re just human beings and they take into that profession their baggage unfortunately and the people that lose out are the patients, because when you are a patient you’re very vulnerable and you always have to remember that, because when you go in you’re expectyou’re expectyou’re expecting something.

And if it’s not forth coming it just leaves you then to have to try and work out yourself and that’s why a good GP would be very useful for that. If they don’tif the consultants don’t give you the answers, go to your GP and he will be able to help you.

If I could ask you now if you have any messages for any other people who might be living with more than one condition, what advice might you give to them, what messages?

Do some research, use the internet, obviously, be wary of which sites you’re on. You know, use Epilepsy Action, the Epilepsy Society websites for information. Don’t be afraid to say to your consultant or to your GP how you’re feeling. Don’t be afraid just to ask questions and if you’re not happy with what is being done, don’t be afraid to tell them that.

And keep pushing and keep asking until you get the answers that you’re happy with.

At the end of the day, it’s your body and your life. You are in control, control is not quite the right word because you’re not, but you do, you have a say, you are entitled to have a say in in what treatments and to be happy about those treatments.

If I could ask any messages you might have for other people who are living with more than one condition, any advice or messages for them?

Well, I think one of the things that, certainly with our local hospital that that not only with what you’re doing, but there’s two or three schemes that are volunteer, you know, which you can volunteer for and if you’ve got the time yet they’re worth, I think they’re well worth doing, because you meet cardiologists and things which doing what I’d said earlier on, like a health check, which certainly I had for the first fourteen months. And it did mean me having to go to the local hospital, you know, two or three extra times but they reviewed how your blood pressure was and also that sort of gave you a bit more self-confidence, you were going in the right direction. You might last a few more years yet sort of thing and to make the most of you know, the, you’ve had a serious condition and you luckily, have survived it and that you’ve got to make the best of what’s left sort of thing.

One thing that I found by accident, nobody actually told me, that if you’ve got this hormone-related problems with the pituitary and I can’t remember the name, panhypo-popul-pituitarism or something, you’d actually get a free prescription, you don’t have to pay for any prescriptions, and nobody told me that. It was only because I was looking on the wNHS website for how tobecause my prescriptions currently cost ninety pound every twenty-eight days. So until I was on that, I was, you know, having to pay quarterly prepay. And then all of a sudden I found this and I was like, oh my God, I could actually get it free. So something that’s not very well-talked about, really.

I was just wondering if there was another patient who was kind of facing similar issues that you’d faced, what would be your advice for them?

With the medication get an app on your phone, I think that is a godsend, and a dosette box to organise the medication, because, you know, I couldn’t carry around all my medication in a bag every day that I need to take. Smartwatches are fantastic, if you can get that link up to medication, because it vit kind of vibrates on your arm more discreetly than having a phone ding to say you need to take your medication. Again, the app that I’ve got, the particular one keeps a note of my blood pressure, weight, etc. so I can keep a little bit of a, an eye on things like that. So I just take a, a note of whenever anybody does any test or anything, you know, I can keep a thing of that, so I can discuss it with the GP, you know, if somebody says, oh, that’s really high, I think, well actually last time it was, it wasn’t. Try and see the same GP if you can, rather than go to different ones around the practice. I findI found that really helped, that really, really helped. Get to know the receptionists at the doctor’s surgery. That’s really good as well, they, the receptionists know me when I walk in now, so that’s really helpful.