0:00 Hi everyone, this week I got some news from the doctor regarding one crazy disease that I kind of for sure will work on and battle it and get the right medication and everything will be fine.
0:18 But this uhm this is an autoimmune disease which means that my own antibodies are attacking my own organs and that kind of lowers the immune system dramatically so I’m constantly sick and I’m very tired and I’ve noticed that for a while maybe even for a year now that I am operating on kind of 50% of
0:43 my normal capacity of the energy and kind of my cognitive capabilities which is enough, kind of enough to be performing, enough to create something.
0:55 Of course there are some spikes and of course lots of times I’ve been lowered on 50% of my normal energy capacity.
1:02 Um and I’m kind of very happy that I figured that out and I know what it is and there is something to be done with it even though that this disease is uncurable and I will have to carry it for my whole life.
1:17 But there are ways to kind of take care of myself in the right way now that I know what it is.
1:24 But here is what I was dealing with for the last kind of a year or half a year. Because of my symptoms I’m constantly sick or having a headache, exhausted and tired, sometimes I cannot even soak in socialize or go meet friends or go in a like a big room of people or a huge conference or the meetup or
1:47 company off-site Even though I did it I noticed that it drains my energy so much and so fast And then I feel really guilty that I’m among my friends or I’m among my colleagues and I cannot give them back what I’m usually giving them uh like just being you know um fun and energetic and kind of listen
2:08 to them and be there for them and also engage, right? Engage with the community. I could not do that for a while Also there was a weight gain and you know lots of things that that kind of create a picture of me being slower, less energized and not that active or sometimes not that engaged.
2:29 And the worst part of it for this last year was uh guilt. It was a tremendous guilt that I’m not doing enough for myself.
2:41 To get out of that, right? Oh, I’m not doing enough for my friends. Oh, I’m not engaging enough with others.
2:49 Also, because the symptoms are quite common, right? Even together and kind of the intensity of them is not normal, but you know the headache.
2:59 Yeah, who doesn’t have that? I mean, get over yourself, take a pill. Weight gain, I mean, yeah, exercise more, you lazy b****.
3:09 And, you know, that’s gonna go away. What do you, you know, uhm, kind of lower level of energy. Well, again, exercise or take vitamins.
3:21 And, even the people in my circle with wishing me the best was giving some of the advices that even more have put me in the position of feeling guilt.
3:36 Because I knew that as soon as I’m starting exercises and I was exercising. I’m kind of I’m getting tired so fast and all my body hurts and my muscle hurt and one of the symptoms of this disease is also muscle weakness and I feel that I’m kind of exercising to the top of my capacity that I can’t do but
3:57 it gives me nothing and it gives me nothing. It just makes give me energy and it doesn’t give me kind of a result in terms of my body looking more beautiful um or like I’m taking vitamins and I’m taking a good complex of vitamins every day but they’re also not helping me so that means that I’m not doing enough I’m doing something wrong and this is why what I want kind of us to be very cautious when we are trying to be helpful even with the with the best of the intent right we we want to give an advice or help a person especially if it’s your friend or your loved one but be very cautious that you might not know what no to the very good extent what are they going through what it could be and just the advices of yeah like go do something about it yeah like you go exercise yeah I can go with you let’s exercise or let’s do this let’s take that vitamin I was taking that vitamins that helped me do it that
5:01 will help you for sure these advices are not very helpful these advices are even more putting pressure on the person to kind of figure out the way how to do better right how to do better how to be better but sometimes we don’t have that capacity sometimes there is a complex medical situation that doesn’t allow us to do that and now you know I’m kind of opening up with this vulnerability this is nothing that I want to keep from people and I don’t want to uhm I also don’t want the other side of the coin I don’t want pity this is the last thing that I want I hate pity being beated right I hate this feeling
5:50 of oh poor you oh no this is also something I really don’t want to have because then You know, I’m not getting this opportunities in life to be respected and treated as kind of equal uhm person or the equal partner I’m still performing I’m doing my job I’m doing the coaching and mentoring I work with
6:12 my clients but when I don’t have the energy when I know that I need to take time off I’m just doing that right I’m just doing that to myself to recover and then I get back but I always get back to uh my work when I have the opportunity when I have the capacity to do that it exhausts me quite fast but I’m navigating my day I’m navigating my schedule and I’m navigating my life in order uh to kind of take a care of myself right I’m taking care of myself so pity is also not something you should do to those people because that is not better than you know trying to engage them to do better or exercise 6:58 or take vitamins or go to the gym or take walks just give them space ask what they might need right instead of giving the advice instead of giving the advice right away the best thing that you can do is just asking yeah so is there something I can help you with or you know how would you like to spend
7:18 the day sometimes you know it’s a that’s not about exercising go to the gym sometimes just giving yourself a space and time to spend an evening on a sofa and watch a movie and if you could be there for your friend in that way they would really appreciate it and it would not make them feel like they have
7:37 to go out and be super active right because sometimes they can actually offer this and it’s hard for them to say no because the only thing that they can do today how they feel is sitting on the sofa watching a movie and that’s the top of what they can offer.