Hello again! The weather is cold, the heater is on, the electric blanket is on and I’m in bed. Perfect recipe for a blog to be written. These blogs tend to be a diary of my health nonsense, and this blog will be no different. I thought things might settle down after I got a diagnosis but they haven’t really. The diagnosis of fibromyalgia and chronic fatigue only brought up more questions. What do i do now? How do i help myself? Is my life going to be this crap from now onwards? Will i recover? This is only scratching the surface, i don’t want to bore you with the inner workings of my mind. I have heard other sufferers ask this question, and i found myself asking it too, are my current issues fibro, or should i be going to the doctors? It complicates everything, not being sure if it’s just another symptom or maybe something on top of that.
I keep getting spontaneously sick every few weeks, the docs say it’s abdominal migraines and put me on meds, but to go on those meds i had to stop my beta blockers for my heart. The new meds are meant to lower my heart rate also but they are nowhere near as effective as the beta blockers. Just sitting down my resting heart rate is 100-110, i get up and walk a few metres and it’s pushing 130, sometimes more. It really isn’t helping the fatigue, everything is exhausting, i find myself living on the couch or constantly wondering where i can sit down because I’m so tired. I try to go shopping but end up exhausted and feeling sick.
I went to the doctors with sinus pain and congestion, clearly my sinus’ acting up yet again. Yet again they tried antibiotics and nasal sprays with steroids, yet again, it didn’t help. The next step is going to an ENT to go under and get them surgically drained. I just want it done at this point, it’s been about a year of congestion and yuckiness. I want to tick this off the list and have it be done with!
I noticed that the lymphnodes under my arms were swollen, i kept an eye on it and hoped it would go away. It didn’t, and camp was only days away so i was talked into seeing a doctor about it. She sent me for an ultrasound, the technician said she couldn’t see anything too nasty but to consult my doctor. I get the results on friday.
When i last saw my rheumatologist, quite awhile ago now, he saw an abnormality on my spinal mri, right where I hurt my back in a fall, and subsequently had 2 surgeries. He ordered me to have an ultrasound to further investigate. I put it in a draw and tried to ignore it because i didn’t want to face the possibility of having yet another surgery. I was speaking to a friend and she told me to bite the bullet and just go and get it done. I booked in and reluctantly went and got it done. The technician barely started the scan before she got up and said she was getting a colleague. I’m thinking oh here we go, what is it this time. She came back and explained to me what I had was rare and her colleague had recently been studying this exact lesion. I asked her what the issue was and she explained that the connections between the muscles and tissues and such are damaged and no longer connected so fluid is collecting in between them. She said it was quite bad and will quite likely needed to be operated on because it has been such a long standing issue and injury. I thanked her for her help and went to the car. I sat there for a minute just thinking oh not again. I could not and still cannot believe this nightmare still isn’t over. I fell 5 years ago, had my first surgery 3 years ago and my 2nd surgery last year. And now it looks likely to be surgery #3 this year. I feel like i could scream with sheer frustration.
As much as i would never ever wish my health on anyone, why does it always happen to me, why do i always get everything? It’s exhausting, in every single way imaginable.
I had my camp this past weekend. I think it was possibly the most challenging thing I’ve ever done. I stopped halway to anglesea to get some lunch and as soon as i got back in the car i started to feel sick. I got to camp and didnt feel any better. I felt sick to my stomach, i wasn’t sure if i was going to throw up or pass out or what. I pushed through and put on a brave face for my camp families, and retired to bed at 9.30pm. My pump alarmed with errors with my sensor all night until i turned it off at 5am. I woke up feeling better but still tired. I hit the wall again around 5pm and was exhausted, i managed to make it through dinner and disco and was in bed by 9.45pm. Come sunday all i could think was get through the morning, drive home and you can sleep. An amazing camp parent carried most of the boxes down to the trailer for me which helped immensely! I managed to drive home without stops in 2 hours and 5 minutes. I stumbled out of the car just absolutely at my limit. I had a few cuddles with my nephew and retreated to the couch. It was so hard because the camp was hugely successful, the parents were great, the kids were great and the whole program went very well, but everything is clouded by how i felt which is so incredibly disappointing for me. I felt so disappointed in myself and just let down by my own shortcomings. It is so frustrating. I’m also proud of myself for pushing through and making it a great weekend for my kids, hopefully making them feel not so alone in this horrible disease.
I’m horrified to admit but my diabetes has taken a back step at the moment. I feel so horribly drained from everything else that I’m finding it difficult to keep on top of that too. I’m only doing 1-4 tests a day, I’ve tried putting sensors on to ease the burden but have had nothing but trouble with them which compounded the stress and did the complete opposite to what i was hoping.
I’ve been visiting a myotherapist weekly and she is amazing, she knows so much about fibromyalgia and chronic fatigue and what we can try. Remedial massage does not work for me at all, it only causes me more pain at the time and for a week afterwards, with no relief. Next we tried dry needling and that has helped heaps. The pain in my shoulder was getting unbearable, and the needling has put an end to the harshness of the pain. It is still there but not as bad.
Ahh i could crap on all night but i think there’s been enough verbal diarrhea for one night haha!
Much love, thanks for reading xx.