Dealing with Chronic Fatigue

JoDha's picture

What NOT to say: "Why are you in bed most of the time?" Or "Why are you sick most of the time?" "Push Yourself." "It happens and it is normal." "You are so lazy." (The last two are "common" statements amongst women.)

These are the questions that have always been fired at me - which have often been the cause of relationship disaster. But wait, "most" of the time?? I, for one, hate sedentary lifestyle. I, for one, would love to go out, love to help around the house or outside, love to travel. One thing many forget that being a #PersonLivingWithHIV, I also suffer from #ChronicFatigueSyndrome. This goes hand-in-hand as one ages. It is also because of being a #LongTermSurvivor (14 years and still going strong). Hence people like us have learnt to put #SelfLove as a PRIORITY - to love, to understand, to care and respect our body first.

And no, we don’t hop up on the bed just like that. There are times when our schedules are very demanding that it totally exhausts us to the core. "So what," you may ask. "It happens to us also"... Well, here lies a difference when it comes to the level of fatigue between a healthy person and a person with #ChronicIllness - when I overdo things, it takes me a minimum 3 to maximum 5 days to recover.

So what is the solution?

Whatever the day/week schedule or deadlines are, I need to know in advance so as to plan accordingly. I carefully plan every activity of my day so that it goes smoothly and I save my energy. Keeping me or any person with chronic/terminal illness in the dark or telling me in the last moment is a strict no-no.

I will tell you the best example:

In June 2018, some of the riders planned to go to Nagpur-Leh/Ladakh-Nagpur on a bike and I was one of them. We rode 6000 kms in extreme conditions and covered it in 18 days. Throughout the journey, I made best use of pit-stops by resting - not in the hotel but on the road itself. Or on the khatiya of the dhabas. Or on the raised platforms of petrol stations. (We call it "Biker's life"). Whenever they stopped, I took a quick catnap. This is how I utilised my energy.

But after reaching home, I was totally exhausted (from being strong for too long, both mentally and physically) and I had to crash on the bed. My recovery took a week but it was the best adventure of my lifetime.

Should I do such adventure again?? Hell yessssss!!!

#TheWellProject
#HIVandWomen
#MyLifeLivingWithHIV
#RealPeopleRealStories
#PositiveStories #PositiveMotivation

By the weay, meet Goldfish (teddy), my huggable companion. Now don’t ask why I named him thus, he is no fish, yeah.... even I don't know why I named him this way, but it stuck.

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I love you

boseolotu's picture

Thank you so mush sister for sharing this came for me at the right time, I am always inspired by you.
Love you.

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Love you so much, Bose. 

JoDha's picture

Love you so much, Bose. 

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Few questions need urgent answers... Thanks

amandel's picture

Hi Jyoti.. thanks for being suchha strong inspiration for PLHIV. I had a potential exposure 2 months back... I haven't tested yet but have symptoms... will go for test as soon as I am able to confront my situation and evaluate my options... I have a few questions which I will be grateful to have answered by you (or any other knowledgeable person here who is fighting HIV while being employed).

Will I be able to continue my job as usual if I have HIV (or will the chronic fatigue or other problems make me unable to work)?
Will HIV drugs and their side effects render me unable to do my job?
Is it possible to take hiv meds and not have your HIV status revealed to family? Or will they come to know automatically from the health issues one faces?
I am 42 years old and have average health. (Except that I am losing body mass since I was exposed). How are people of my age placed to fight HIV?
I am unmarried living with parents and married brother... If I leave my family will I be able to fight HIV staying alone. Or some attendant is must to look after HIV patients?
Does hiv cause hospitalisation often?
Are there any good yet less expensive Private hospitals/doctors to treat HIV in Delhi/Gurgaon? Please advise.
Is free treatment in govt hospital as good as that in Pvt ones.

I am the only member in the family who earns and manages all expenses and loans. I have no savings. I do not want to stop working even for a small period. Please advise.

Many Thanks

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HIV isnt a big deal if you love yourself

JoDha's picture

Dear Aman,

First of all, thank you for writing in. 

Here are the answers to all your questions:

1) Will I be able to continue my job as usual if I have HIV (or will the chronic fatigue or other problems make me unable to work)?
Will HIV drugs and their side effects render me unable to do my job? Answer is YES. You will be able to continue your job but that depend on WHAT job you are doing. If it is in IT with rotational shift, then no, that won't work for you. If you are in labour work, then no. If you are on a deskwork job then you need to walk around every two-three hours as sedentary lifestyle equally isnt good. HIV medicines are not at a fault here - the fault lie in US, we are the main culprit because we don't live a healthy lifestyle, hence it is advisable to watch what we eat and exercise daily to keep ourselves physically and mentally fit)

Is it possible to take hiv meds and not have your HIV status revealed to family? Or will they come to know automatically from the health issues one faces? - You really don't have to disclose to your parenrts, friends and family if you don't want to. But if you are married then your wife has every rights to know so that she too is able to take care of her own health for you, and to look after you better. You can remove the label stickers from the bottle of medicines and can tell your family a little white lie (like it is medicine for blood, or it is a booster medicine, or so on) And no, they will not know you are HIV positive unless you tell them or unless they find your medical report BUT YES they will know something is wrong with you if you don't eat, sleep properly or lose weight or remain stressed all the time.

I am 42 years old and have average health. (Except that I am losing body mass since I was exposed). How are people of my age placed to fight HIV? - for that you need counselling. Counselling will guide you in how to better care of yourself emotionally, physically and mentally depending on the medication you are in. You can even ask me - I am reachable in Facebook under name of JoDha Hukum. You can inbox me for counselling (though it is chargeable as it is my profession) - and don't worry, I check spam messages too hence I will be able to find all the messages everyone leave for me :)

I am unmarried living with parents and married brother... If I leave my family will I be able to fight HIV staying alone. Or some attendant is must to look after HIV patients? - You don't need attendant or caretaker at all. You are able to live on your own too. You will be able to take care of yourself and lead life the normal way. I speak from my experience as I have lived most of my life alone and I don't need anyone just because I am HIV positive. No. 

Does hiv cause hospitalisation often? - Not at all.

Are there any good yet less expensive Private hospitals/doctors to treat HIV in Delhi/Gurgaon? Please advise.
Is free treatment in govt hospital as good as that in Pvt ones. - DNP+ at Neb Serai is your go-to. Meet Loon Gangte and give him my name. 

 

Hope that helps :)

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Erin1989's picture

Erin1989 liked the aglm_blog Doctor's Visit

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