The importance of Support

[jimdrum]

Ok, not a marathon training blog, but thought I'd highlight another side of WG and illnesses that are just as debilitating.

When diagnosed with WG, it is easy to just focus on getter better with regards to your physical health and be dammed with the mental side of it. It taken me many years to confront what WG had done to me aside from the physical element.

For myself, I lost 2 years of my life from the age of 17. On reflection, it was very much the formative years of becoming an adult. At that age, you leave school, join uni/work, start drinking in pubs and start being a responsible (well, semi-responsible ) adult.

I remember my doctors asking how I was coping inside etc. But to be honest, as much as I may have been struggling; seeing another doctor, or another hospital waiting room didn't exactly fill me with joy. In hindsight, I should have but In all honesty, the doctor should just insist.

I'm lucky in that I've had friends, family and even work colleagues to scrape me off the floor when I really needed it (I really did!) I never went to them, I just bottled it all up and it eventually came to the fore. Running has been good for getting things sorted though!

Not even a good article really, just hopefully a good warning to admit life can be sh#t sometimes and to speak up.

[John_Mills Volunteer]

Hi Jamie, that's really moving - straight from the heart, saying it how it is. Please can we keep it for our new website.

[jimdrum]

Feel free! Could probably be refined a bit, but just blurted it on the page!

[JacquiM Volunteer]

Hi Jamie, I can so understand about the important of support. Like yourself, I have WG and ended up with acute kidney failure. I was extremely lucky in that I was diagnosed very quickly and am not now having dialysis but the affect of what happened to me completely out of the blue did take it's toll on me mentally so to speak.

I do get support from my work colleagues and have a wonderful friend who is prepared to sit and listen when I have my bad days, which are becoming less I'm pleased to say but I live alone and sometimes it can be little difficult. My consutant has arranged for me to have counselling, I turned it down when I left hospital as was still in shock at the time so will be taking up that offer.

It is great to have 'listening' people to ask, offload and question both on this website and VasculitisUK also I have joined a six week course starting end of this month for people learning/coming to terms with long term illness which may be useful for me I believe. It is quite timely too as it is coming up to my 1st anniversary.

Well done for taking on the marathon/s Jamie, I'm still trying to get my head around the fatigue thing!! I will get there although I doubt I will ever be able to attempt what you are going to be doing

Good luck to you fella

JacquiM

[jimdrum in reply to JacquiM]

Firstly, thanks for your support Jacqui!

I'm so grateful for what I have got and I'm determined to make the most of it. If 1 person benefits from my experience or running then I'm a happy man!

You don't need me to say it's a good thing you're doing the course, you know it yourself! If I had the courage to do that I would have!

The real Marathon was getting from the hospital bed to road on the way home. Reading more and more of peoples stories amazes me as to how everybody reacts differently to the illness/treatment. Amazing it's taken me 10 years to do so... I slept maybe 3 or 4 times a week if I was lucky. Had a very bad temper and my taste in food changed entirely!

I never in my life thought I'd run the length of a football pitch let alone a marathon. Everything is possible so keep the faith!

[Dramaticharlie]

Wow Jamie - its nice to just hear someone say it. I was diagnosed at the same age as you and for the first year I thought if i didn't tell anyone and just got on with trying to get better, it would soon go away. But of course it didn't and of course my classmates noticed something was wrong, but by then it had become a secret, something I was hiding. I was also stubborn and didn't want help from groups like this, I didn't want to look for them, I didn't want to talk about it. Luckily I have been much better this year as I got the chance of a fresh start with uni, and now I am honest and open about things and it's a much better way to be, I don't feel as stressed as I used to! Sometimes I think that the mental affects of WG have been more damaging than the physical, I lost a lot of confidence and as a consequence I am a completely different person now, but a good change I think. In the end WG will have made me a stronger person, I think.

Oh and yes it is very frustrating when I am at uni and can't drink but everyone else can!!

Seriously though, I agree that I never told the doctors how I was really coping and I struggled to confide in my family and friends, so I think I needed an extra push from somebody, I think doctors should be more aware of the mental affects, I was never given counselling or anything like that. Even if someone had just told me about this site, stubborn little me would have eventually got curious.

[jimdrum in reply to Dramaticharlie]

Hi Charlie,

I somehow think at that age we are programmed to think we can cope with everything. It's a bit of a whirlwind of treatment, bloodtests and confusion to get caught up in the mental side of things. It's mental enough!!

I agree about the mental effects being more damaging. As much as you can mend the body, the mind is what controls it.

I hope you are enjoying Uni! I had a ball at uni - apart from exam time obviously!

[louisej]

Thanks Jamie

This WG has really been hard to take it all in, my life has changed and that is hard to accept.

Thanks again.

[jimdrum in reply to louisej]

No problem Louise,

All you can do, is be strong and stay positive. Watch some trash TV, read some books, try and smile at least 17 and a half times a day (18 times would do I suppose), and look forward to everything life has in store.

Take care,

Jamie