Invisable Illness and Rude People

My invisible illness tends to give off the impression that I'm not sick. Although I thank you for your opinion I am seriously ill. Wow I actually said it...still in denial about how I need to adapt.

This past week I fell...again and it wasn't good. I think my body said last straw. I have been walking about hunched over or just in massive pain. Back pain is like toothache pain. Omg I am telling you constant throbbing and spasms. Nothing works to get rid of it. I know what will but I don't feel like spending 4 hours in the er just for pain.

Well we were coming put of Walmart I was barely able to hold on to the cart as I was wakking. We put our stuff in the truck and I used the cart to get me to the door..stubborn me won't us my cane. Well I was able to push the cart over enough were it was out of everyones way but, this guy sees me and says some people just are too lazy to put a cart back. As he was rolling away with the cart I told him I had a back injury. Don't know why I felt I had to defend myself but I did.

Then a few years ago I was in the hospital with severe ibs. I had to be admitted cause I keep vomiting so much it wouldn't stop. Well as I was in my room a priest walked down the hall to go talk to patients. He walked past my door and said under his breath you don't look sick, why are you here and he walks on. I fought back the tears regarding the the idiot's way of thinking. I should have said something. I wanted to say something. I would have said something but, I was raised to respect my elders.

But every Wednesday when I go for IV therapy I walk past the chapel and I am tempted to go in and talk to whatever priest is there and school him respectfully on invisible illnesses and treat others as you wish to be treated needs to be expressed to his fellow priests. Will I? Don't know. Maybe one day. Maybe one day.

I have family members who put me down for my illness. I have accomplished so much in the 12 years I have been sick. But I am looked on as lazy or I need to go talk to s therapist. Guess what I did. Nothing wrong with me. I am finding ways to cope by studying or hobbies. U don't just lay around all the time. I fight my body to get out of bed these days. Things have to get done no one to do it but me. My husband can't be counted on cause he is always at work. So it falls on me. Yet I am lazy. I can't be put done it causes stress, stress makes my pain worse. So I had to distance myself. Even from my own Gram who I love dearly. I am struggling with my health and to be put down for being sick it's just well..hurtful. Family should understand each other not put them down. I wasnt raised that way.

There are so many people out there with chronic invisible illnesses. Instead of doing the old you don't look sick...just give us a hug. Show us some compassion. We are in pain all the time. We may not look it but we are.

Pain

Some say pain is a part of life. It seems like so many have good days and bad. My bad seem to out weigh the good.

Don't know if it is the heat or my body just hates me but I am in head to toe pain. I got a little bit done today. Well all my sons stuff. All his I folded laundry is all the my stuff I got done.

In pain but my son who is bipolar and functions at 8-14 doesn't get it. He acts like he does but he pushes and pushes till I collapse. It is one thing after another. I think the stress of the situation is making my pain worse.

I don't remember being in so much pain your joints even hurt. Along with my other illnesses I have pre ms. Which means I have all the symptoms of ms but nothing is showing on my scans. But my neuro doctor said that modern medicine doesnt understand that the lesions don't have to be there to have ms.

I may have over did with cleaning yesterday for our Bbq or the fact that the central air isn't working right may have a lot to do with it.

Pain seems to be a part of life. Sometimes I can cope and go about my merry way. Sometimes life has to stop and be on hold for a bit. Not my style but I am being forced to learn it.

Surviving carbon monoxide leaves you with a chronic slew of illnesses that cause pain. I just don't have one I have multiple. I think I will name them multiple buddies. Chronic illness just sounds like a death sentence to me. I survived that. Well truthfully..for now I have. Survival is up to the universe. I leave it at that. I live day to day. Can't make plans they always fall through. I don't like to say my multiple buddies rule me but in a way they do. The pain dictates my live, my plans. I don't feel I have my own life sometimes the pain takes over and there is nothing you can do.

Tonight I cried. I haven't did that regarding my multiple buddies since the diagnosis if my neuropathy. It took my dreams of going back to school for medical massage. I was crushed I cried. I cried this evening cause the pain is so intense. This is what I have to look forward to. This is what is going to complicate things. This makes me weak.

My cry was a release. I stopped asking why a long time ago. The why is Christy Bristol who sold us this house. She claimed she had it checked out she claimed she wasn't even here. Although neighbors tell us different.

I struggle with chronic pain. My pain managemeny doctor in no uncertain terms that what do you expect me to do?

Seriously, that day I came home and just cried. Told him pain management is a no until I can get my other illnesses in line. Well thank you doctor. I hope when I go see him that it will be different. That he might show a little compassion for my pain. I can hope but I am filled with doubt.

When you go to the doctor they always ask 'How are you?" Hmm truth I am dying in pain, my brain is scrambled because of the pain, some days I can't even walk any more, or pick my neck off the pillow, my bones hurt throughout my whole body. I used to say "Fine". Lately I have been telling them pain.

My outlet for my pain seems to be writing. Sorry if it isn't well written. I had my head in books not the ones from school but, the library. The ones about real life. English had no bearing on me. Have forgotten most of my writing skills. But hey I just need to write.

Hmm..Dysautonomia..

I guess this post is a long time coming. About a year ago I was diagnosed with an illness called dysautonomia. I had the tilt table test which I failed. Then I had the qsart which I also failed. I had a great doctor who diagnosed me. He was very friendly. I knew what he was going to say when he said my autonomic nervous system wasn't functioning right. I said dysautonomia. He said dysautonomia. I read about it and I still don't understand every thing about it that I would like to know. But the words were deeply satisfying and crushing at the same time. I finally had a name for the hell I had been going through but, it also meant a new set of circumstances..again.

He also told me they needed to do a skin biopsy. Which I was like what?  They told me it was to test my nerves in my skin. So got the paperwork to schedule that. They scheduled it rather quick.

At the time I had been excited about going to school for licensed medical massage. My doctors nurse told me I may want to hold off on the decision and just stick to what I am doing now. I was sort of puzzled and put off by that comment. But I went ahead started getting the paperwork together for school.

The day I had my biopsy I wanted to throw up. Nothing new there. I am chronically nauseated. No seriously chronically. Figured all would be fine and I can start school in September.

Well it wasn't. I received a phone call and they told me I had something called small fibre neuropathy. I told the nurse ok. What do I need to do. She had me come in. Met with a new doctor..my one I had just met months before had retired. This guy was telling me about the dysautonomia and the neuropathy. After he was done talking to me the nurse came back in. She asked how I was doing after all that. I told her fine. I don't understand much of it. Except I am broken really broken. My main organs don't care to function like a normal human being. But I have never liked normal. At least I now knew why nothing worked right. 2 heart ablations, dizzy all the time in the hospital all the time for dehydration. Even though I stay hydrated. Reality kicked in.

I told her I just have to figure out how I can balance this and school. I told her starting in the fall was going to work well for me cause my dysautonomia causes me to almost die every summer. She explained to me nicely this time that due to both my dysautonomia and especially the neuropathy that they weren't going to let me. Needless to say I was crushed but I figured I would go home call the school and see what they said.  I thanked her for the advice and I told her I have a lot of reading to do to find out how to conquer this illness and left.

Crushed Deeply Crushed

Got home and I called the school to tell them what the nurse has said. I was still so excited about starting school. It went with my reiki healing etc. I was saddened, crushed, destroyed, heart broken..to say the least. I got off the phone and cried. I am not one for depression cause it really has no place in my life. Being depressed isn't going to fix anything. In my world anyway. If I can't control it then there is no reason to even be depressed about it. But my dreams were destroyed in one day over one diagnosis.

Yes my dysautonomia is a result of my carbon monoxide poisoning.  I have accepted that I have it. Have I accepted that I have to live with it yet?  No I think that is a big challenge for me. To live sick. I live in and out of the er so much I don't even want to go anymore.

Constant nausea, constant dizziness, full face migraines, skin itchy or burning, being allergic to everything under the sun...including the sun itself. I don't know how to just be sick. I have days when I am stuck in my bed. I get so mad at myself that I am not getting anything done. I have been working around that these days.

I started Iv saline therapy once a week because no matter what my body doesnt seem to retain salt or stay hydrated. With dysautonomia you need to live on salt. Try finding things to eat with the amout of salt we need now days. I got so dizzy one time I opened up one of those fast food packs of salt and downed the sucker.

I also started a new medicine which made my potassium low so I was just in the hospital Saturday night. They just need to give me my own room already

I have many doctors, many tests and many appointments. It is never ending. Being chronically ill is a nightmare to say the least. It is just how you go about it that matters. It isn't easy people look at you and say well you look great are you feeling better..sometimes it is better to lie and say yes. I think it is because I don't really want to face the full reality of the situation. I have been facing some of it. But all I don't know. My goal is to keep on going on the good days and the bad.

While I try not to let my illness get in the way of real life at times it has. I have missed out on things, had to cancel plans etc...special things. They will not allow me to drive. So counting on everyone drives me mad sometimes. One day full reality may set in and I will find a nice corner to go cry in for a few days until I can fully deal with what I have been given. My health is a daily battle. When I think it is better it goes downhill or I end up in the hospital. I think I am fooling myself that one day I will beat this, sadly deep down I know I won't. There is no cure for dysautonomia at the moment. Its range of what it does to our bodies are endless. I ask don't take pity on those who are chronically ill..instead take in that we have a special kind of strength that keeps us going through all we struggle with. Peace and Healing

Battles

Sometimes we are told to choose our battles. What happens when the battle chooses us and we have no say in it. I have fought a daily fight with my health since December of 2002. It is when we bought our home and moved in. Nothing was too out of the ordinary. It was a century home and needed some work. All homes do. My battle began around Christmas Eve when I started to get sick. Headaches, dizziness just felt like I had the flu. Sadly come to find out months later I would wish from that day on it was the flu it was carbon monoxide poisoning and I was slowly dying from it. No one knew, not me, not my doctor, no one. It is the silent killer for a reason it goes so undetected. Even by the medical field.

My battle (that was handed to me on a silver platter) has been fighting this and all the after effects. There are many, more then you may think.

Today I wondered about choosing your battles and whether or not this battle can ever be truly won. I am alive some people would say. To them I would tell them that is the smallest part of the battle being alive. Keeping it that way is a nightmare. Doctors, therapy, medications, more diagnosis, then more doctors more medications, more therapy. Week in week out. It is amazing I haven't lost my sanity. I have been pushed pretty close toward it already.

But day in day out I fight this battle against my own body. I wonder some days how my body is dealing with this fight. I wonder how much more it can deal with before it truly breaks. I feel broken more now then I did when this first started broken, shut down... I am not depressed about it for it is something I have lived with for so long and my studies at least keep me balanced but fighting a losing battle is what is stating to occur to me. This is a battle I will never win. Sure I have life that is my won some would say but truly I don't feel it as a win. Winning your life should not have to come with a price. Fighting a battle shouldn't still kill you in the end. But this one will. I am not afraid of dying been to the other side been connected to it when I was a kid. I don't want to die now though. I have much to live for my family, my friends, my clients and whomever else I encounter to be guided to help.

I can help heal and give advice to others. People have told me how much better they feel cause of me. I have discovered over the years my amazing gift has grown and expanded with my illness because of it. I have a better connection to those who are ill and fighting a battle like me. I have a degree of being an empath that I never knew was possible. To be truly and connected to people. People I don't know people who are strangers who become my closest friends that I consider family.  Because of this illness and because of what I am going though. This is what keeps me going.

People tell me they wish they can do something to make me feel better. My job on this planet is to help others. To guide others, to help them see. If being a wounded warrior allows me to do that then so be it. It is my battle one I wss handed. It is and will be a losing one, but it is one I will still fight. I have my family (mainly my Mom who truly I think I one of the things that give me what I need to continue this battle), my close familylike friends (and you all know who you are), and clients who I meet who keep me going and keep me fighting this losing battle.