Quote:
Originally Posted by amkxoxo
So like I have said many times on this forum. I am beyond grateful that I do not have severe pain. But I still have this condition and it affects my life. Ever since it started affecting me I have been way more away of things I didn't notice before. Any little abnormal thing that happens with my body I try and figure out now and most times I consider it CRPS. I have had a bit of forgetfulness since I was injured. I am unsure if this is mere forgetting small things. It got to the point where many times in one week I will leave my home and get in my car and forget if I locked my house and I often walked all the way back to check. Once in a while I didn't lock it but mostly I did. It seems to happen a lot with little things like locking my house, car, and embarrassing enough flushing the toilet. I always have to go back and check, and it seems more than normal. This has been going on for about a year now. Some days I wake up and I just don't feel quite right. Its just I feel weak and tired. Not in pain, just sometimes I feel like I need extra rest. I have woken up from a decent night and felt like I haven't slept a bit. This isn't all the time now. I have a hard time sleeping at night. I am a night owl.
My problem is that my symptoms seem to change so much. Some times I feel great, sometime I feel like crap, some times I have this and not that and they are all random. I could go days or a week without burning and then it starts up randomely and happens everyday. My family doesn't understand. They make fun of my ailments. "your always dealing with something different" ....well Yeah. I think they don't believe me. I don't want to vocalize anymore because I feel like its just not serious to them and it is to me. I am so grateful to be as healthy as I am. I think they think I exaggerate. I don't know how to handle this.
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I am sorry you are feeling this way, I think most of us have gone through this with friends, family and even strangers while we battle something 'unseen'. Sometimes it can be harder on us to deal with the emotional aspects of this condition that the physical pain, I wish there were easy answers but unfortunately there isn't. The only advice I can offer is to consider seeking out a pain psychologist who you can talk to without fear of insensitive comments. We all need someone to talk to but sadly most friends, family can't handle this kind of thing for the long run. If you talk with someone that has endured the battle of cancer they will likely share how in the beginning everyone rallied around but over time.. that dwindled. It is not that people don't care it is just that we are programmed to seek out positive things in life and so overtime they drift away or just simply don't want to hear it. That doesn't mean they don't love you or don't support you they just don't have the coping mechanism as this isn't their personal battle.
Did you know that it is very common after an injury to need additional sleep? It is also very common to experience that if you are anxious or under emotional for physical stress? It could even be that you might be anemic or have something entirely different going on (or yes, it could be CRPS) so it would seem logical to seek out your GP or even Gynecologist to rule out other causes for those symptoms. As I mentioned in another thread keeping a journal of all your symptoms and activities might help you and your doctors put all the pieces in the puzzle in order to determine just was is causing these symptoms. In the mean time you might want to look at what you are eating, what you are doing before bed that may keep you from sound sleep, write down your symptoms and then try not to focus on them afterwards, jot down when you are being forgetful and if that correlates to a lack of sleep from the night before. Watch an inspiring or uplifting movie or read/listen to a good book.
There are many websites that help families/marriages cope with chronic medical conditions as it takes a toll on them almost as much as us. It might be a good place to go to help you get through this difficult time. It might shed light on how you can communicate with those around you so that you can get the support you need.
We are here for you also.. this is a great place to get support as we have all been through similar situations.
Be strong,
Tessa