I’ve been wanting to make a post like this for awhile but every time I start one I end up deleting it. Sometimes I’m afraid people will think I’m looking for attention in posting these kind of stories of my life and I get self conscious because I know there are lots of people who don’t want to hear it. However, I need to stop thinking that way. There are many other people suffering like me and I have learned, after following more people with Chronic Pain issues and Fibromyalgia on instagram, that I don’t need to hide it or feel like it is just a minor part of my life.
Because, that is just it. It is not a minor role in my life.
It is my life and I have learned to deal with it as best as I can.
I understand that people who don’t get sick like this will never truly understand. I don’t fault them for saying things that are actually hurtful and I know some of them mean well. Friends, Family, Co-workers and the like.
During a work evaluation my bosses said something that made me really think. They mentioned that I seemed to have been a lot healthier in the last year. Honestly, it surprised me that they said this. Mostly because they actually noticed the change in me, though it was not quite right.
I’m not healthier or better, I have just gotten a lot better at managing and hiding my issues. They don’t get to see the other side of me when I get home. The days when I can’t eat much, or when I have to spend hours in the bathroom with cold sweats and pain.
Or the moments when I’m laying on the sofa in agony because my legs and/or arms feel like lead or like they have been pelted with rocks.
Or when I’m trying to eat and my hands have such a tremor that it is hard to keep my food on the utensil.
That is okay though. I don’t need them to know this or to understand. It is my business and as long as I can make it to work and get the job done it shouldn’t matter to them.
I’m lucky to have very supporting family members. Those who know how I suffer and don’t try to say I’m just being lazy or faking it. I understand that is very rare when I read stories of other people fighting their close family members, treating them like they are lazy or attention seeking. It is amazing that even family members will do this.
That also brings me to something that I noticed about my chronic issues. A lot of people talk about saying goodbye to their old self. Almost like a funeral service for their past life when they were healthier and happier. To try and move on and cope with their new life and situations. I didn’t really have that though.
I have been sick since I could remember. As a young child I have constant problems with my stomach hurting. It has only moved on to other things as I got older. I could say goodbye to my old self once I was diagnosed with Fibromyalgia but my old self was not much different then my new self.
However, I have come to terms with my new way of life. I have learned to love myself and put myself first to keep myself from hurting more or making things worse for myself. Sometimes friends and family get disappointed but the ones that matter always understand in the long run. One day I might be good enough to join my mother for a nice walk around the neighborhood, but another day I can barely hold my cellphone to text her.
When my sister comes to visit, we like to go looking around at stores, which I’m happy to do but I get worn out super fast and sometimes we have to plan to do short trips through out the day rather than just spend hours at the mall all at once.
Awhile ago I had to leave while watching a movie with my friends at their house. I was really into the movie and in the past I probably would have tried to push myself to finish it and be in really bad pain but I didn’t. I told myself, this movie will be available to finish another time, why should I suffer through it? It won’t make me enjoy it more that way. So I went home and took care of myself first. I know this kind of made my friends sad but they did understand.
So I surround myself with people who will understand this. I think that is why I choose not to date. It would be nearly impossible for me unless that person also suffers with chronic problems and can understand me. That is rare though.
I’m not trying to be a downer with this post. In fact I’m trying to be positive. I may not have the life that most people have and some might even call it terrible but I’m happy to be alive and I love my friends and family who understand and try to help me. While I’m cursed with this weak body I have many other positives in my life for which I’m grateful for.
I’m also lucky to have found some doctors who do not write me off and actually do their best to try and help me. I know how hard it is to find doctors like that with chronic problems.
I will not hide it anymore though. I will not lie to people about feeling better and I will not push myself to do something to try and make others like me or happy just to end up feeling like death myself. I will also not feel ashamed of my issues, if someone wants to say things like –
“You’re too young to have all these issues!”
“Stop complaining about being tired all the time. We all get tired!”
“You don’t look sick.”
“It could be worse.”
I will just walk right off. No need to get into fights that are meaningless to people who will never understand anyway. I will not stop talking about it because it is my life now and I refuse to be told to shut up about it because they can’t understand.
I’m proud of myself. Still working a full time job, still learning and studying new things, still trying to do my hobbies even if it isn’t as much as I use too. I’m still finding ways to smile and enjoy my life. I fight one day at a time and each day I make it through I consider a big victory, wither it be a bad flare day or not. Even if things change in the future, that is alright because I know nothing stays the same and I’m prepared.
Anyway, most people know this if they have been following my blog but if you are new I will just mention the conditions I have.
- Irritable Bowel Syndrome (IBS) – Diagnosed sometimes when I was very young, maybe around 13-14. Still not too sure this is exactly what I have but it does help the doctors to get medications approved for me to take. The reason I’m not completely sold on this diagnosis is because of my partial obstruction. IBS doesn’t cause damage to your colon but mine seems to have done that anyway.
- Fibromyalgia – When I heard this word I was so upset, I think I was around 27-28. They first mentioned it a few years before I was officially diagnosed but they had to run a series of tests on me to rule out other things that can seem like Fibromyalgia. I even had a MS scare when they found inflammation in my brain. Luckily the spinal tap showed nothing. This one was a hard pill to swallow because, like IBS, there is no known cause for it and no perfect way to treat it. I was also very tired because it was annoying enough to deal with IBS and stomach pain. Now I had to deal with wide spread pain in the muscles, skin, and joints.
- Asthma – Had no idea I even had this. Mine is not very severe though, so I count my blessings. I was just going to an allergist to test me for allergens but when they heard me coughing a lot in the waiting room they were like, girl you have asthma. They were right! Once they treated me my cough stopped.
- Gastroesophageal Reflux Disease (GERD) – I think I got diagnosed with this after an EGD was done (around the same time they gave me the IBS diagnosis) and they saw inflammation through out my esophagus, stomach and the beginning of my small intestines. This one sucks… even with the PPI medications they put me on I suffer a lot because mine is more likely due to bile and not acid.
- Interstitial Cystitis (IC) – Uh, not really sure if I was actually diagnosed with this or the doctor who decided to say I have it was full of shit. Haha, I honestly think my bladder problem is just tied in with my fibromyalgia and ibs. Still, I was feeling like I had bladder infections a lot and going to the bathroom too many times. They finally referred me to a urologist and he diagnosed me with this but didn’t really do any tests on me soooo… yeah I just didn’t go back. I was happy enough know I did not have a bladder infection all the time. Shrugs.
If you made it down this far thank you very much for reading through my long rant. It means a lot to me. ♥ I know it got kind of long. I just feel the need to start posting some better blog entries these days. Ones that are more real. Thanks for reading. 🙂