4 replies to this topic

[Blueberry]

Hi again guys...

I'm just coming here to hide a small rant/fearish thing... I feel pretty cut off and alone at the moment, waiting with only my blue rescue inhaler (which is pitiful!) and nothing else until after I see the chest consultant on the 28th.. my friends have mainly melted away (I think they think I'm being pathetic or when they hear me coughing, think I'm catching and don't want to come near 'until I'm better')

The thing is, I'm self employed as a photographer... well... I pretty much may as well say I was ... I've been too ill to work for most of the last 6 months, and now I'm beginning to feel half better (some goodish days some awful) I don't know what to do. It's not like I just have to turn up to work and try my best, I am my work, I hold full responsibility, I'm in charge - there's no one else at all to rely on, I have to be able to carry my gear, direct my clients, gallivant around outdoor settings, run to capture that cute moment in the park, transport myself and my backdrop that weighs as much as a 7 year old and my camera, lenses and lighting on public transport....

I don't dare to start promoting myself again and announcing I'm back because one day out of three I can't walk the 5 minutes to the bus stop without a little break. Never mind carry my backdrop to the bus stop and then travel somewhere ... if someone books me I can't tell whether it's going to be one of those days or a better day. Although to be honest I haven't even tried to carry by backdrops yet, I'm not sure I can...

Also who wants to employ a photographer who splutters into a coughing fit down the phone!? I wouldn't! Gah!

Luckily I'm studying for a degree from home so I'm not completely stagnant, but... this was my job and my passion and I feel too scared to do it... and we're back to solely relying on my husband again..(not that I earned very much at all but still!)

I just feel so sad. I don't even know what's wrong with me properly yet but it already seems to have ruined so much

[Ken-FL]

Blueberry, you are in a bit of a dark place where we have all found ourselves from time to time. I can't tell you what the solution is but the first thing is to get through the upcoming specialists appointment and get a clearer fix on what your bottom line health issues are and what kinds of treatments they recomend. Once there is a clearer diagnoses and some treatment options laid out you will be able to better evaluate your ability to pursue your passion and your vocation and adjust accordingly. This disease is scary and it is at it's scariest when you haven't been fully diagnosed or been provided with a sensible treatment plan.

While I know it is very hard you need to focus reight now on your health alone and once that is sorted out in a more certain way you will be able to start to deal with these additional issues and concerns.

Remember the rules: Rule # 1, Don't sweat the small stuff.....Rule # 2 Its almost all small stuff!

Thinking about and praying for you as well as sendiing hugs your way.

Ken-FL

[Tim]

I guess it would be fair to say that many of us fight these kinds of exacerbation's on a regular bases. They're scary and frustrating
and we just want to feel better. It takes awhile to get over them even after all the Pred and antibiotics are finished because they
drain us of our strength and mental fortitude... It sometimes seems like an uphill battle but you have to keep fighting.

I suggest:

Find the right Dr that you can work with. Make yourself part of the team and stay informed about you Health plan

Get on the right meds and make sure you take them as scheduled.

If you smoke..... QUIT. Smoking will cause your lung disease to progress much faster and you will suffer with these exacerbation's
on a regular bases, causing more damage with each and every one.

Exercise as much as you can tolerate. At first it may not seem like your able to do very much but in time, you will see improvement.

Eat right and try your best to maintain a healthy weight.

You may have to find new ways of practicing your Trade but follow these suggestions and you might just surprise yourself at
how much you'll still able to do.

Easy Breathing,

Tim

[Dee]

Hi Blueberry.

I think you're feeling overwhelmed with all that has been going on with you. Any illness can be life altering, but it's even more difficult for you because you really don't know what your diagnoses is. Try to take it easy and relax. Getting stressed out will only makes things worse, and in a few weeks, hopefully you will know what you are dealing with. Once you know, then you can decided what will work for you. Life is always changing, and I'm sure in the end you will get back on track.

Take care.

[Blueberry]

Thanks guys...

I was having a very bad day, felt like my life was over at 24, etc etc. I used to volunteer often with refugees while my kids were at school, and I've been told that under no circumstances should I volunteer with them until the doctors know what's going on - with all the TB, hep, pneumonia etc that they arrive in the country with it could be really dangerous.. so it's just put a hold on everything I used to do... it's maddening. Gah!

You're right Tim, even if I can't find something to reverse the symptoms I can find ways of working within my limitations... I need to mentally prepare for that, if it's going to happen, so I don't go to pieces *if* I get bad news.

I will keep repeating that mantra Ken!! It's a good one!

Thanks Dee... taking it easy isn't very me really, so these 6 months have been....well...weird!

I just ordered some craft supplies to cheer me up. Something I can do even when I can't move around much... I'm thinking about learning to make lampwork glass beads if my consultant tells me it's something that's going to progressively worsen... maybe I'll have to rely on my artistic side to make money from home. I'm so lucky that I can do that!

Actually I already booked myself on a taster glass melting course... any excuse.