I never know quite how to start a post about Fibromyalgia and Chronic Fatigue Syndrome… There are so many things that go through my mind that I can’t always organize them into anything that I think is interesting or informative. Of course, there are also times that my brain fog is so bad that it’s not possible to post anything at all. Those days are always rough… The last 24 hours or so have been rough for a different reason. A burning, tingling, roving pain reason.
Since my diagnoses I’ve spent more than a bit of time researching clinical studies, doctor’s websites and the blog posts of other people like me. With both CFS and Fibro there are many symptoms that I’ve never experienced. One of the weird quirks of each illness is the symptom set is different for each person. There’s a certain set of criteria that each patient must fall within, but the rest of the symptoms vary from person to person. I’m so thankful that other people share their thoughts and insights – it’s reassuring to know I’m not losing my mind – but oddly enough, it creates strain at home. Has anyone else experienced that? Earlier this evening I was talking to my husband about a new kind of pain that’s been bothering me in the last 24 hours. He asked me if I had ever considered whether or not reading information from other people ever ‘encouraged’ me toward adding new symptoms to my list… A very legitimate question. It does happen and I can’t say I haven’t done it at some point. With all of the information available on the internet – good and bad – it’s easy to become convinced that health problems are much worse than they actually are. Researching a set of symptoms can return results ranging from the common cold to rare, untreatable diseases. I try not to do that… If something is wrong with my health, I try to seek care and advice from a healthcare professional. However, sometimes with CFS and Fibro it isn’t that easy. There isn’t a doctor in my area that specializes in either of my conditions and the field is still undecided about what causes either illness and what courses of treatment work best. The combination can bring about less than satisfactory results when I visit my doctor’s office. Although I trust and respect him, there are days I’m just not up to the stress of not having concrete answers and solutions.
My husband does his best to understand all that and tries to provide support any way he knows how. Problems only arise when I need one kind of support and he tries to provide another. Asking if I’m adding symptoms due to research was his gentle reminder of the pitfalls of relying on so much outside information… I’m grateful he’s looking out for me, but it’s not easy conveying how helpful it is to put a name or description to a symptom that I thought might only exist in my head. Being able to breathe a sigh of relief because I’m not, in fact, going crazy and there are other people who understand the things that are happening to me. Even the things I haven’t spoken aloud to anyone. I’m doing my best to try to communicate with him that part of having ‘invisible’ conditions means that I need positive, uplifting support no matter what. On the flip side – I hope that I’m appreciative enough of the effort that he’s making. My health concerns him too, and I know he’s just worried and trying to help. Living with this is a strain on both of us and I hope that we can continue to refine our communication styles and grow stronger together… Even though he won’t ever fully understand what I’m going through, I can’t imagine dealing with this without him! We may not always see eye to eye and I know he can’t read my mind and always anticipate what I need, but I’m blessed to have someone who loves me and tries to do what he can to bring me peace, hold my hand and walk by my side. Even in the midst of all this pain and confusion, I’m so very blessed… 🙂