Dealing with Sjögren's Syndrome

It's not easy having Sjögren's syndrome. For a start, it's rare in people of my age. Typical sufferers are women in their late forties, I'm only 25 so I often get funny looks from people when I attend my rheumatalogist for check ups. It's an auto immune disease with no cure, that can flare up for different reasons i.e. in my case after the birth of my son O. It's something that you are born with but may never trouble you unless something causes it to flare up badly. The symptoms include dry eyes, dry mouth, cracked lips, constant fatigue, swollen and painful joints, eczema, and being more prone to having allergies and picking up infections and diseases of all kinds. A lot of the symptoms can be effectively treated with medication i.e. lubricating eye drops, artificial saliva sprays, anti-inflammation drugs, painkillers, etc. but it can be very dehabillitating and depressing at times. Like when you have plans for toilet training a stubborn toddler and then have to postpone that because you've picked up a pelvic infection that leaves you in so much pain that you can't move. Or caring for a demanding toddler and an active baby when you're so tired that you could drop asleep, and you're all on your own because your husband is working and no-one else can help you out today. 


Don't get me wrong, I don't think of myself as a victim just because I happen to have a chronic auto immune disease. Having been through so much with the diagnosis of Sjögren's last year, it makes me grateful for what I do have (family, friends, house, car, etc.) and I certainly appreciate these things a lot more now than I did in the past. Let me explain what happened: My wonderful son O was born last July. I took to motherhood a second time quite happily, enjoying the new addition to my family with my husband and daughter R. In October, I became extremely ill, at one point I was so weak that I couldn't even pick up O. I had swollen joints that hurt to touch, a pink rash all over my body, dry mouth, raised temperature and insomnia. So I spent 6 weeks being passed from my G.P. to A & E, back to my G.P., then admitted to hospital awaiting diagnosis of a mysterious disease that seemingly did not show up on any of the plethora of blood tests carried out. Meningitis was ruled out, then they suggested flu, then 'rheumatic condition' was bandied about until I finished up being transferred to CUH (Centre of Excellence for Rheumatalogy) and finally was diagnosed with Sjögren's. That was a really difficult time for me, I spent nearly 3 weeks as a hospital in-patient away from my kids not to mention being transferred to CUH on my first wedding anniversary. If it wasn't for the heavy painkillers prescribed for my joint pain or the Xanax I took to help me sleep in hospital, I'm certain that I would have had a complete nervous breakdown. What made it so difficult to diagnose my condition was lack of knowledge on the doctor's parts (no rheumatalogists are in my local hospital as the HSE has designated them to CUH which is their Centre of Excellence), the failure of one of the G.P.'s I saw to take me seriously when I was looking for help with my condition prior to diagnosis, the lack of available beds in CUH due to HSE cutbacks which meant a delay in getting the help I needed, and the A & E consultant who dismissed me home from my first visit saying it was only flu. I spent most of those 6 weeks in tears out of frustration and fear, not knowing what was wrong with me. I thought I was going to die at one point, it felt like no-one could help me. Even my father-in-law was convinced it was only flu, it wasn't until he drove me home from CUH after my diagnosis that he started to take me seriously. 

Today I'm a lot better than I was in hospital, my condition is under control with a lot of medication and I'm able to pick up my children and care for them. Sure, I get sick quite often and my energy levels could be better, but I'm happy. And that's the most important thing for me.