Skip to content
Is This it?
avatar
mecanopsis posted:
After becoming very ill 3 years ago I was diagnosed positive and borderline AIDS. Since then I have been receiving treatment and my cd4 seems to hold around the 400 mark. At the same time I lost the last 3 remaining members of my family and my marriage brokedown. Depsite being on treatment my life is not the one I had before. I am constantly tired all the time and have become physically weak. Theres rarely a day goes by that I feel bright or perky instead I spend most of my time feeling sick, headaches, muscle aches, tiredness and these things have now become the norm in my life on a daily basis. My doctor is fairly understanding as is my AIDS/HIV consultant but despite constantly telling them how I feel no one does anything, offers an explanation or even says this is how I will always fell and so I have spent the last 3 years talking it seems to a brick wall. Since Christmas last year I have lost nearly 2 stone in weight and my clothes hang on me and despite my doctor putting me on weight gain drinks there is no improvement nor is there it seems any explanation or concern I now weigh at nearly 40 years of age the same as I did when I was in my early 20's. This has also been compounded by problems with my knees which I have had surgery on improving the one knee but sadly the second knee is worse than before surgery and due to lack of physical strength the muscles have waisted in my legs. Over the last couple of weeks I have felt extremely poorly and noticed at the weekend a large swelling under my armpit and so went to see my doctor. She seems unconcerned and advised me to come back in a week if it hasnt gone. She also believes it not to be HIV related because my HIV consultant advised her that he feels that with my count at 400 theres no concerns regarding my HIV and feels that my health problems are psychological. Now I feel its all pointless and nobody really understands how my life has been changed as a result of my illness and what I go through everyday. Three years ago I was working 10-12 hour days sometimes 7 days a week. When I wasnt at work I was gardening from 7am til it was too dark to see. I was a very physical and strong person rarely not on the go. Now it takes me almost a day to do what I could have done in a couple of hours. Im suffering from depression diagnosed 2 years ago and also suffering with IBS. Last March it all got a bit too much and I took an overdose. I still to this day dont remember anything about it maybe thanks to the amount of alcohol I'd drunk but sadly/gladly dependant on the day someone found me and I'm still here living what seems a continuously ill existance. No one will tell me if this is normal to feel constantly ill or be affected like this, all I get is 'everything looks ok with your stats' no one seems to have any idea what im living with but then it seems its all in my head despite friends pushing me to do something because I look so ill. But whats the point, no one listens. After my depressing rant I ask the question. 'Is this it?' Is this how the rest of my life with HIV is going to be and after 3 years of pushing for answers and getting no where can anyone blame me for giving up?
Reply
FirstPrevious12NextLast
 
avatar
Caprice_WebMD_Staff responded:
Hi and welcome, I hope that others who share this journey will soon look in here and talk about their own experience. Have you looked for any support groups in your area? It sounds like you need (and deserve) a lot of support and you're not getting it. You're getting the medical care you need but nothing more. I also really encourage you to look into regular therapy. Anyone whose life has been dramatically impacted by illness has a lot of loss to process and therapy can really help with this. And keep talking here if it helps; even if it is a quiet board, just writing things out can help. You're not alone and I'm sorry you've felt so alone in this for so very long. *hugs*
 
avatar
nervousandheartbroken responded:
Hey friend, I may not fully know what I your going through, but I can tell you first hand that I know what it feels like to have nothing. Life is always worth living my friend. Everyone goes through ups and downs. I will give you an example. My Grandpa got cancer and he was told he was going to die. He got himself into a horrible depression, didn't eat much, lost lots of weight. This was over a period of about 8 months. He eventually decided that he was going to live his life and carry on regardless of the situation. His mood improved, and so did his health. He gained some weight, and his outlook on life is much better. He has peace of mind. Since you are HIV positive, you know better than anyone that HIV is not a death sentence. I know several people who have been HIV positive for over 25 years, and they are carrying on strong. They know with modern medicine they can live long long lives. They have a purpose to. You must find something to inspire you. You are so young, and you have many years to live. Look at your passions, and work towards them my friend. You have friends who care about you. I care about you as another human being to another. I am praying that you find something to inspire you. You should NEVER give up on life. You are worth more than that. You are worth so much more, and you have many many many years ahead of you. Make new friends. You could even have children! They do sperm washing, so its not impossible for you to have a family, with healthy children. There are so many things ahead of you, and you would be wasting a great life by giving up. There is so much ahead of you. Dear friend, I have something to say to you, and I hope I do not offend you by doing so. I do not know if you are religious at all, but it has helped me to relax and find my path. I think it would help you relax and bring you peace. You and me as well as everyone else in this entire planet will be dead someday. All of us, none of us are immune to death. What makes the difference is how people spend their time on this earth. I personally believe in God and in an after life. I have two verses I would like you to read, as they have helped me. Jeremiah 29:11-14 "For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster to give you a future and a hope" In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. "I will be found by you", says the Lord. "I will end your captivity and restore your fortunes. I will gather you out of the nations where I sent you and bring you home again to your own land. 1 Peter 5:7 Give all your worries and cares to God, for he cares about you. My friend, please don't give up. Contact me anytime. I will talk to you each day. I will pray for you that you find a purpose. Never give up, you are young and have much life to live. God Bless, Pat
 
avatar
mecanopsis responded:
Hi Caprice and Pat thank you for your kind words of support. I know there is a great deal to be said about mind over matter and being positive but for me after three years of doing this and feeling as though I'm getting nowhere I think I have run out of steam to fight my corner. In September 2006 I took a step forward based on my physical difficulties and started my own website on gardening which is still going. This later developed to a full time business selling gardening items and was later followed by opening my own shop. The plan was that by working for myself I would be able to work according to my health without having to worry about letting anyone down whilst still being able to do something for myself. Having invested £25,000.00 things were going well for a while but gradually I struggled more and more because of my health and following my overdose I couldnt manage it. A very close friend worked for me running the shop but by August last year with everything else going on economically I could not afford to keep everything going and so had to close the business and file for bankruptcy. This also put me under a great deal of pressure and though I loved it I am now releived it is all over. My passion in life is gardening and I spend my 'well' time in the garden whenever I can though as I've mentioned everything takes so much longer to do now and there is so much I just physically cannot do and those things I now have to ask for help with which I find a very difficult thing to do. I am in some respects in denial and try to live life as I have always done and struggle and push on knowing I just cannot do it alone but unable to admit it. The fact that I struggle to do the things that I am so passionate about to me shows that I am not creating my problems in my head which is why I think I was so upset about my consultants letter. Since my first post this letter has constantly gone through my head and I am so enraged because I feel betrayed almost. All this time I have been saying constantly how I feel and each time they have acted as if they were looking for answers when really they havent believed me from day one. A few months ago my Psychiatrict Nurse attented my appointment with me to try and understand what was HIV related and what was depression related and my consultant said he would change my drugs to see if it was a side effect of my drug regime and if this made no difference he would look along the lines of post viral syndrome. Nothing more has been mentioned on this matter since even though I suffered with this for 2 years after suffering from German Measles at 25. There is very little in the way of support groups in my area the nearest being around 30 miles away. I have no contact with anyone other than my ex's family who have almost adopted me and whom I rent a flat from next door and my occasional mental health appointments. I hate being around people and have really become a hermit. Going out is a scarey experience for me now and I have on occasion gone without food because I just cannot handle going to the shops that day. That said I do enjoy being on my own I have my animals for company and my adoptive family to speak to on a daily basis. Thinking now I think I avoid people more and more because most do not understand as my illness is not really visible and so they cant understand my difficulties and I hate having to explain to them because I feel as though its constant justification as to why I'm not out earning a living like they are. At this momet in time I feel like stopping my drugs etc not to make myself ill but because I feel let down by my consultant and dont see why I should have to spend 2 hours driving to see someone whom I no longer have faith in to give blood and collect a prescription. I'm ill most days so it's not really going to be much different and besides why do i need the drugs its all in my head! I
 
avatar
Caprice_WebMD_Staff responded:
Depression is a very real condition and grief is a common reaction to all you are dealing with. Everything you describe sounds like both of these are going on for you. Going to therapy is not an admission that 'it's all in your head'. Quite the contrary. I want to share a bit about myself.... I also have a health condition, since 1992, which has severely impacted my ability to live my life as I wish. Every time I do as you have done, make adjustments, change my life, live it the best I can. And yet more and more is taken away from me. When I was first diagnosed and each time my life is more limited by the condition and/or the medications, I have had to go through some grieving (which can include that sense of betrayal and very real anger plus the temptation to isolate myself and push others away). I keep working through those things and past therapy has really helped me with coping strategies. This is why I recommend therapy to you. Medications can help but therapy is where the real work happens. Please resist the temptation to isolate. Isolation feeds the depression. (((softhugs)))
 
avatar
peanut2505 responded:
Hi my friend :smile: I understand where you are coming from. Living with HIV has been a struggle for me also. I felt like I was different than anyone else and felt so alone, that no one understood me. I have no one to talk to that knows what it is like to have HIV. Many times in life that I just wanted to just give up, but I couldn't let myself because I have a little boy that I love more than anything in this world and couldn't leave him without a mommy. Most days are a big struggle for me and I try to keep my head hi, but there is always something that gets me down, weather its money or life in general, but I guess that i had learned to just except me and my life for what it is. I can't change things, even though i wish that i could. I know what you mean when you say that you don't have much energy to do much! I was a clean freak and now i feel like i have to make myself do things, so that they will get done and i don't like feeling that way. I don't have family or friends to talk to, just my ID doctor and my case manager, but i am here if you ever need anyone to talk to about anything. Keep your head high hun and i hope that things look up for you!! :smile:
 
avatar
mecanopsis responded:
Thanks for your response its nice to know there is someone else around who feels the same. Sadly this whole thing really has gotten to me and I seriously have had enough. Therefore I have decided to come off my drugs and allow nature to take its course, the sooner the better I say. Ironically I had an appointment with my Psychiatrist today who felt there was not really much she could do for me and that she feels I am just angry with the world and feeling sorry for myself. I told her of my decision and whilst she felt saddened she had to respect my choice. This I find amazingly bizarre because if I wanted to take an overdose again they would do everything to stop me yet I can allow my illness to kill me. Therefore if I want to end my miserable life in a painless manner its unnacceptable but it is permitted for me to do the same so long as I suffer a slow and possibly painful death. Where is the humanity in that? The way I feel after this appointment is just like I did when I took my overdose. Unfrtunately I dont have the drugs avaiable that I did then so cant, but if I did then I would be another statistic of a system failing its patient Sorry to rant and sound so negative but I really have had enough disdaining life and every hour that goes by the more I wait in hope that my immune system will crash and I will be free.
 
avatar
Ryan_Gralinski responded:
Its not the virus killing you, its the medication... THe medication causes nerve damage and debilitating pain, and side effectts.... forget the meds and eat healthy, take care of yourself, wash your hands alot so you dont get sick...Thats what i do and ive been poz 28 years.
 
avatar
lds09 responded:
I just read your post and it was very touching, as I read it over adn over it was like I could feel your pain. I am a Nurse, and this brings tears to my eyes. Regardless of your condition you are still human and You do MATTER!! I hope that you will continue to vent your feelings. I know that it may not help much help, but if you need someone to talk to I am here for you.It breaks my heart to think the pain you live through on a day to day basis. :lightsmile:
 
avatar
garza16577 responded:
hi im so sorry to hear this from u! i dont know u but i do understand what u are going thru!! im not a religious person, but i do have alot of faith in GOd and i put all my faith in him! and im not sure if you've read the bible or have one, im gonna give u some verses from the bible, im not gonna preach to u or anything like that but i just want for u to read them and just talk to god about all this, he is there to listen to u!! Mathew 8:17, 8:23, 18:18-19, John 10:10, Romans 8:11. and always have faith in God, he is the owner of this universe and of our lifes!! He does the impossible!!!!!! :wink:
 
avatar
hopeformore responded:
Hey, I know what you are going through and doctors to sometimes tend to make you feel like a hypochondriac. But when you are living with HIV you have to be, no one should make you feel bad for paying attention to your body. That's the right thing to do. I have been HIV positive for almost 5 years now....I have a 6 yr old and a 7 month old. They are both healthy so far and am getting my oldest tested again for peace of mind and I'm scared to death. My husband (who gave me the virus) got very ill with PCP and that's how we found out, I feel like i will never have another lighthearted day again, but surely they will come. My husband became undetectable on his meds which was great! and then quit taking them (he's been off for a year and lying to me) So he is very sick again and causing undue stress on the whole family. I went to my HIV doc yesterday and I've been having lumps in my armpits that come and go and she made light of it also, but gave me an RX for a mammogram....waiting on bloodwork. This is the rest of our lives and lots of days are dark and I don't even want to get out of bed to play with my kids....then the guilt....but we just gotta live for those bright days, they ARE there somewhere, hang in there things won't get easier, but they are manageable, Do the fun things you did before you found out you were sick, just don't do them as big......one daisy in a pot may make you just as happy as a gardenfull, the important thing is you did it, and you can do it again! Hang in there!
 
avatar
chordae replied to mecanopsis's response:
Hoping you are still among the living!

I hate to know that you gave up with out a fight!

I was diagnosed with HIV on August 12, 1993. I only had 223 T-Cells in my body... I waited until April 5, 1994 to finally start my AZT MEDS. That was the only thing that was being given to HIV/AIDS patients. Which gave me headaches, pain on my legs and night sweats ...I felt like you alone, tired, frustrated depressed and ashamed.

I attended a group and became friends with people who was worst than I was! Some of them have since gone but what great memories I have from such courages people.

I had the misfortunate to be allergic to half of the medications. I start the Meds and break out in a rash...
Through out all this. I set goals for myself. That's what keeps me going!

I didn't want to leave this earth until my niece graduated from High School, I attended collage and see my cousin get married. My cousin got married 4 years ago. My neice graduated 2 years ago from High School and I graduated with an Associates Degree in Medical Administration Assistants, LAST YEAR! I took me 10 years put I did it!!!

I only have 49 T-cells left! I continue everyday on a new journey. I won't let AIDS take me until I have live my life to the fullest!!!

If you feel tired take Vitamins! One A Day has helped me. Vitamins C, Zinc, B6 and B12! Eat lots of Spinach with carrots you can even blend them together in a blender and make a shake out of it. Get massages and chinese therapy helped me a lot. I could feel the needles but is due to the fact that I'm skinny but it helps with my pain on my back and my legs!

I go to stores when they open...There is no one around and I don't have to be stare at...What would those celebrity do just to be skinny!!!

I think having it for 3 years is nothing!

Stopped crying and feeling sorry for yourself and start LIVING LIFE!!!

I live by myself! I have 5 cats. I make sure I get up to feed and clean their cat litter every other day (I wear gloves and a face mask). They are depending on me and that is another reason to LIVE!!!!

I'm in the process of attending one class in September. Going for my Bachelors Degree! It will probably take me the rest of my life but what else is there to do!!!

START LIVING!!!!

By the way I am a Puerto Rican woman who was born in NYC Projects in the lowest side in Manhattan.

After divorcing by Husband of 8 months. his last words were, by the way "I gave you AIDS!" No man is ever going to want you! That was the die I died and a new me awaken!

Back then you had to wait two weeks for your blood work to come back! I remember what I was wearing that day and hearing the words, "YOU ARE HIV POSITIVE" but I don't remember getting home.....

Now living in Texas due to the warm weather. Miss my family, friends and working!

STOPPED CRYING AND DO SOMETHING ABOUT IT!
 
avatar
kalnflorida responded:
probably.maybe get worse even.21 yrs ago they told me 3-5 yrs to live.I got drunk alot.I'l never have a license again.I no longer drink for quite some time now.people treat you like garbage and doubt it'll ever change.sorry being brutal but i believe everything I'm saying.I tried hard but it's a losing game.wish i could get a dog,cabin in the mountains and be away from so called society.
 
avatar
An_192391 responded:
I am replying b/c I am just newly divorced & I am so VERY concerned my spose contaminated me w/hiv/aids. Was married 20 yrs. No cheating that I knew of ....until WELL AFTER the divorce.....he had another wife & kids. I have severe skin rashes & massive weight loss. Dr said it was just my thyroid & my nervbes from divorce....but I NEVER had acne in my entire life....until now & sun splotches that are not accounted for. I too am very legargic/tired at age 39. I now weigh abt 92 pounds & should weigh 135 ! I am 5 foot seven white /caucasian.........it's like having the chicken pox for the past 2 years that will not go away !!!! ? Should I get tested for the cd4 ? I had the measels & chicken pox way back in 1978....so it cannot be an on going chicken pox nor posion ivy/sumac causing acne/rashes/weight loss & night sweats. Help ! It's so embarrassing to suddenly have acne when I NEVER did before.
 
avatar
ilisten13 replied to kalnflorida's response:
Hello I totally hear you....I just posted as the anon_44379.
How do I join this group b/c I am so scared & feel so alone...like u...i just want to know if or NOT i am hiv/aids .....BUT....at the same time I am so dead scared of fatal news when/if i get to a free clinic for a blood draw. It would be a reief to know its just allergies....but i highly doubt it now after so long wqith skin & lots of other medical conditions/symptoms that so much mimic hiv/aids. What do I do ? Go for the cd4 test & pray I am negative or face scary ftal demise/gloom news results ?


Helpful Tips

Rashes from below
My biggest concern ever while having a girl in bed is hoping my rash doesn't show. At one point my own penis is cock blocking me by having ... More
Was this Helpful?
0 of 1 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.