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It’s a new year, but I feel hopeless
It’s a new year and I feel so hopeless. I don’t want to sound like a whinging whiner but I’m just struggling to find the positive in anything at the moment, and haven’t for quite a few months. I can’t understand why I feel like this, I’ve survived so much that I’ve been told was miraculous. I was told that there was a very low probability of surviving open heart surgery 15 months ago, but I did so surely I should be feeling triumphant, but I’m not. I was led to believe that the surgery was going to solve all my problems- my PH would resolve and I’d feel like a new person. Well my PH has not resolved and while I seem to have recovered my ability to think, little else has changed. I’m still dragging an oxygen tube around with me 24/7, still can’t walk my dogs, still can’t walk further than my bathroom without getting short of breath and feeling like I’m going to pass out,. My friends have all fallen by the wayside because I think people are just over my health issues – there’s only so much drama that people can handle. It’s ironic because I don’t really ever talk about any of this with other people because the level of understanding is so low its just not worth using my precious breath to get a pretty blank stare back. I know it’s because people don’t grasp PH or what the implications are, but it’s been interesting to see how a friend who sadly was diagnosed with cancer (she’s now in remission) has had so much help and concern heaped on her that she’s getting annoyed, and people don’t even want to have a coffee with me because they don’t know how to deal with me.
My doctors are bickering about what group I fall into group 2, or 3 or 5. My pulmonologist says all three which is complicating treatment options. So right now I’m not really getting much treatment except for Ciavor because apparently most of the meds available in South Africa are contraindicated in patients with heart valve problems. I get asked wasnt the surgery supposed to fix you? What are the doctors going to do now? And I pretty much have to say we don’t really have a plan aside from crisis management. People don’t want to believe that there really just is no plan for me and I can’t tell them if I’m going to live for a year or 30 years. I’d like to think the latter but I’m not that optimistic. I think I’m also throwing people because I get up everyday and work like a Trojan all day to make my business work, because I simply have no other option. Surely I can’t be that sick if I can work everyday?! I don’t tell them about the fatigue and the toll it takes on me, about how some days my heart just beats out of control, how some days I struggle just to make myself a cup of coffee.
And of course I’m not the same person that I was before 13 October 2019. I’ve got a different outlook on life now. I’m not all that interested in gossiping about what Alida said to Colleen. Even I don’t understand who I am anymore. I’m just doing my best to survive and to find ways to get used to my new normal.
Things are going to hell in a hand basket in South Africa and we really are teetering on the brink of disaster. Our entire electricity grid is close to collapse and I feel like I might find myself in the psoition of those people in movies who are like the last people on earth having to self sustain. South Africans are a pretty resourceful lot and we are quite resilient but I know I’m not alone in thinking there’s no way back for this country.
I’ve moaned enough now,, thank you for giving me a place to do this where I know I’ll be understood.
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7 Replies
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@traceyaustralianmigration-co-za I must apologize! When I messaged you earlier today about an interview I should have asked first how you are doing! I’m so sorry to hear how difficult things continue to be for you in so many areas – health, friends and family and country!
I can’t remember – has transplant ever been discussed as an option for you?
Also curious regarding, “I’m not all that interested in gossiping about what Alida said to Colleen.” Whose Alida and am I the Colleen people are gossiping about? LOL!
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@colleensteele hahaha sorry, Alida is my next door neighbour and Colleen is the local music teacher / piano player at happy hour, carols, wakes you name it. @everyone, no one is gossiping about @colleensteele in Dullstroom.
Transplant has been discussed, but I won’t be considered until I lose weight. Which also just makes me more despondent because I literally try everything and I just can’t lose it. I know it’s the meds I’m on but, except for my pulmonologist, my doctors have no problem fat shaming me. It drives me crazy because not one of them has come close to trying to help me find a solution. I actually will not go back to the cardiothoracic surgeon because of how rude he has been to me. I hope like mad that there’s a new equally talented surgeon on the horizon when my valve needs to be replaced again. It just wears me down constantly being conscious of how I look. I really just want to ask them if they think I enjoy being over weight and feeling less than because I’m fat.
My sister and I had a good laugh earlier though because we were watching Survivor Australia and I commented how much weight the last 6 people have lost. I said maybe I should go on Survivor but that probably also won’t be a solution because I’d be voted off first. We did chuckle though at the idea of competing in the outback with my portable oxygen slung over my shoulder.
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Hehe! @traceyaustralianmigration-co-za I was like, “Who is this person I don’t know talking about me behind my back!” For a moment there I thought maybe I’m a more exciting person than I give myself credit for! LOL!
Has it been discussed how much of your weight might be fluid retention? I know a young woman who needed to “lose weight” but couldn’t get it off. When she received a heart and lungs transplant she dropped a crazy amount of weight instantly. Turned out most of what she was carrying was fluid retention.
But hey, go ahead and giver Survivor a shot! You would have my vote! LOL!
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Hi @traceyaustralianmigration-co-za, I’m sorry that you feel so hopeless as we enter the new year. What are your doctors saying when you ask them why you are not improving? They could hopefully figure out a solution that at least offers you relief.
Finding joy when your country is in disarray is frustrating and challenging. Big hugs to you and know you can vent here anytime.
You are a Survivor; I vote for you, too.
LOL, @colleensteele- gossiping; that cracks me up.
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Hi @traceyaustralianmigration-co-za Your first post had me almost in tears but your other posts cracked me up. It is great to have a place where we can just be who we are and accepted even when we fuss. My doctors want me to lose weight as well. I lost 15 lbs, but that was fluid. I only have a little fluid left according to my BNP results. I just can seem to lose any more (and I have a lot more to lose!!!). It gets depressing when you can’t feel like you expect to feel. But remember there is always hope. You may not see it right now under all your current circumstances, but it is right around the corner. Look for the positives. It may be hard, but goodness, you have survived some really hard things. One positive is you survived the open heart surgery! I’m rooting for you.
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Hi @debbie, I must say your post to @traceyaustralianmigration-co-za spoke to me. Isn’t it amazing how we can say something, yet many others feel the same and can’t seem to get the words out?
Learning to be who we are and being accepted in times of joy, laughter, tears, and fear is important. Here we love and support everyone; venting is OK, too.
But the deep connections we feel for each other across the miles fill my heart with joy. Now, if we could get society to do the same, we would all be better.
I know they say we are good at giving advice; well, the advice you offer, Tracey, about looking for the positives and never losing hope, is something you need to remind yourself, too. Once that extra fluid is gone, be gentle with yourself and that weight loss; it’s tough, but adding PH makes it more challenging. One day at a time. Rooting for you both, strong, fierce ladies.
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@traceyaustralianmigration-co-za I just wanted to add my support. I hate fat shamers! Most of us have struggled with weight, some of us more than others but I finally had a coach help me with something that actually worked for me, she explained that I shouldn’t Diet .. instead she had me focus on Adding more protein and build more muscle. Restricting yourself is so hard but this new concept Really helped me by adding more protein I wasn’t hangry all the time like 50 different diets I have tried and failed at .. and honestly I do get full faster and stay full longer.. Building muscle is really any resistance training but with your current health issues I would talk to your team about some type of physical therapist assistance. My husband uses my weights and resistance bands while he is sucking on oxygen watching TV so if you try it your not alone lol. I just wanted to share this information with you because this was a big game changer for ME, Hang onto hope and don’t let anyone bully you or shame you! My trainer says no one is really over fat just Under Muscled.
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Hi @kygon, I love that way of thinking. You’re right restricting ourselves is not fun. I prefer to increase my lean protein, veggies, and whole grains.
Each small change adds up. Thanks fir your encouragement to @traceyaustralianmigration-co-za. Others will find the advice helpful, too.
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