Skip to main content

What I like to stress about #ChronicIllness


For me that is what I most consider when I think about my invisible illnesses. For example I have asthma and hypothyroidism which are both invisible illnesses but for me they are very well managed. I discuss them for time to time and they do have some impact when you look at the whole health picture but overall I cope with them very well because they are managed. On the other hand, I have chronic pain conditions of fibromyalgia, chronic migraines and peripheral neuropathy and add those together and the impact on my life is significant.

Some of our invisible illnesses can have a significant impact on our lives. And, by the way, no rule that specifies we can just have one health condition. Rather think that is uncalled for though. One should be the rule and then you are good for life. Should be in the rule book.

The impact on our lives can be seen in all facets of our life. Our divorce rate is over 75% and we know the extra struggles and issues we have to overcome there.

We have a higher risk of depression and suicide.

Often you see stats on the cost to a country but the fact is there is a cost to Us. Education is affected as well as careers. Our income levels are affected as a result. I fought very hard to keep a career but in the end I have been on a long term leave for two years because I was not able to function working full time. We have a risk of becoming isolated. I call this the Hermit factor. It happened to me. It is a slow process that happens when we are in too much pain or too fatigued to go out, so we decline invitations, until slowly the invitations stop coming. Friends drift away and you do not have the energy to try and stop this from happening. Until you are a hermit.

Migraine Impact information
That is a lot of impact we have to deal with. We actually can deal with a lot of life stress caused by our invisible disability to be honest.
  • Work or not to work that is the question- Sometimes we need to reassess our work situation to see if it is working for us. It may not be. We may not be functioning very well and this may be causing a great deal of mental and emotional stress. If so we have to think about our options. Talking to our employer about accommodation, about flex-work, about less hours or about work from home options. If this is not available then going on leave might be the way to go. Although it might be worth your times to explore other job types that might work better for your health as some are a better fit. Or you might look at downsizing to part time and going that way. Again sometimes it is good to look to see how you might be able to reduce the pain and suffering caused by the full time work.
  • The Hermit factor- Like I mentioned this occurs with us not even noticing it right away. We are fighting our health, trying to get things done and just getting through the day. So we might miss this social life of our slipping away. However, getting out of the house and socializing actually is good for us mentally and emotionally. It is a good idea to start slowly picking up a social life. Which, I know, is difficult when there is nothing to start with. It had been recommended to be when I started to go for short walks, to get me outside. To invite people, even family, for coffee at the house or a coffee shop, so that it was a comfortable short duration. From there I updated to a game night where we play cards with co-workers of my spouse. But start slow and by inches enter society on your terms and in your way. Some people like to join like art therapy classes or other classes like pottery to get them out and commingle with people, does count as socialization.
  • Relationships- Of all sorts can be a topic its own I have already written about. Suffice to say issues come up with chronic pain relationships that do not come up in others. We have to understand what caretakers feel and go through. We have to understand what friends must be feeling. We must understand how some family members just do not know what to say. They key is always communication but differently for each group. The problem is that without it resentments can manifest and bitterness can develop. But we can foster good understanding by explaining how we are grateful to our loved ones for what they do for us, for being there for us when they need us, for being an ear to talk to, for being understanding. We can also explain our limits and suggest compromises. No, I cannot go to that large gathering on Saturday because I will not be able to handle it but I can meet you for coffee on Sunday to chat.
So those of us with chronic invisible disabilities have to deal with a lot of Impact on our lives. We have to cope with that as well as our illness and try to manage that. When it is difficult that stress can make it harder to cope with our illness.
Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…