Tag: Auto-Immune

Good Days, Bad Days…

Good Days, Bad Days…

Blech. I was down for the count the past three days, and hard too. I mean really really freaking hard like a mack truck hit me then backed up did it again and again and again.

The more I research Ankylosing Spondylitis (AS) the more I begin to understand ‘arthritis’ related conditions and symptoms. When my father was diagnosed last year it was another piece of the puzzle falling into place.

When my body started to go haywire about 5 years ago I was playing whack-a-mole with pain. Then it was just my shoulder and elbow randomly and relieved somewhat by cortisone and the usual OTC pain relievers.

At one point I had a trainer at Equinox who was great helping me get my core in shape, which is key for back pain and in general. We steered clear of the lower back and knees until things got stronger but not by much. We learned to work around things and I thought I was in relatively good shape physically.

I’ve had back pain all my life and just chalked it up to me being one of the unlucky ones and that I could just find a way to work around things. That worked for the most part until the pain moved from just the lower back and hips to pretty much everywhere.

On any given day I could be taken down by one specific area or every joint and muscle could rise up in revolt all at the same time. It’s day by day and the randomness is maddening.

I don’t know that I have AS mind you, I just know it runs in the family, as does many other forms of arthritis, so it seems like a prime candidate.

Night time is brutal even with good sleep practices and a tempurpedic mattress and pillows. I have 6 pillows lol. 2 tempurpedic, 2 down and 2 generic poly fill. I’ll start out all nice and comfy but come 2, 3 or 4am and the back pain is off the chart. That’s when all the tossing and turning begin and I may as well never tried to go to sleep in the first place. Hence the constant fatigue and every other system thrown totally out of whack.

In some of the research there’s a lot of overlap between GI issues as well as AS issues. My hope is that once I get back to seeing Dr’s in Boston again. Is that I can finally find a good rheumatologist to try and get to the bottom of things.

After spending the past three days in bed all I know is whatever is going on is that it totally sucks without medical support. I’m being realistic before I start getting to appt’s come August. I just need to know if the pain means my joints are at risk or am I cleared to do physical therapy or other exercise program.

Even when I do get that info I’ll still need help with the pain though and that’s worrying. With thirteen years in recovery I’m not about to be led down the opioids road that’s for sure. Yoga and stretching I can do. Exercise in the form of gardening I can do. Adding in more walking or other outings for longer duration such as photography? That’s gonna be a challenge without a clear medical support plan.

Another sucky part is when you’re stuck in bed or indoors, the last thing someone with anxiety and PTSD issues needs is to get stuck in their own head. Boo, hiss, bad, get out of the head or you’ll go nutty…trust me on this.

I’ll have to put the Complex-PTSD (CPTSD) research on the back burner for awhile. I won’t be much good to myself until I can at least take a normal walk without feeling winded and exhausted.

Not being able to walk as part of my daily life makes me miss Boston. A lot actually. I was importing some old external drives awhile back and the images from my old site brought back fond memories.

With my aversion to public transportation I’d always preferred walking and Boston is such a walkable city. The architecture and history always made walking an absolute joy.

Note to self: Send your lens to Nikon for repair you dolt, how are you going to document your journey back when it’s stuck  on 24mm?

One other lovely side effect or symptom from wither IBS or AS is trouble with vision. Today’s one of those days when a random eye will go completely out of focus regardless of eyeglasses or drops. Coupled with my right eyelid dropping down not only is walking an issue but so is my photography.

That would kinda be a crusher I think. Here I am about to launch my boat into uncharted waters, where photography is very much a part of the healing plan, and now looking through a viewfinder is further hampered.

Next week is a big week. I’ll be saying goodbye to the counseling center I’ve been going to since I first moved and which is also bittersweet. I’ve come to enjoy the drive between here and Plymouth and the back roads are an enjoyable part of that during any season. On the plus side I now know the route by heart and it’s still an easy drive to the waterfront.

The following day I have to head to Boston for an overnight at a hotel. Not sure if I’ll drive or take the commuter rail but it’s all workable. Part of the change in prescribers is due to health insurance and also to go back to the PhD. I’d been seeing for years. He knows my history best and it’s a familiar office and familiar process. It took me many many appointments to learn how to get in and out of his office without a full on panic attack.

Anxiety & PTSD make for a brutal combination when it comes to Dr. Appts. I had to plan everything down to the minute so I wouldn’t be stuck in the waiting area too long but arrive early enough just in case he wanted to see me earlier. He seemed to like doing that anyway, not that it was an expectation. Planning included how long each coffee shop took to get through the line on the way to the appt. Whether he wanted both doors opened or closed, it’s an old brownstone and has these massive double doors from the outer entry into his office.

Eventually I got the hang of things, knew where all the exits were and that sometimes the bathroom light would be out so plan ahead. Part of my situation is I need routines and part of it is making sure I can be on auto-pilot due to the early morning hours. With there only being one day a week for afternoon appointments sometimes I’d have to take a seven a.m. appointment which makes it kinda hard to be mentally nimble.

Fingers crossed by body will cooperate between now and then. Nothing fun about being bedridden with something that feels ten times worse than the flu and there’s nothing you can do about it. No position is comfortable…ever…and it’s relentless.

 

 

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