What's Your Most Recent NSV

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  • detradearmas
    detradearmas Posts: 10 Member
    Soooo, today's NSV is that I went to the gym this morning.

    Not the most exciting, or the most remarkable. You're thinking, "And? I do that all the time! That's not a major achievement!"

    Until you understand the circumstances . . .

    I've been fighting a major flare of psoriatic arthritis (an auto-immune disease that causes inflammation of the joints etc) for the last twelve months. I was only diagnosed in July 2016, when I was going into remission after a small flare (but I didn't know it then). This latest flare started when I had an IUD fitted. In trying to control the flare, I've been on several unpleasant treatments which have been largely unsuccessful, mainly due to the side effects (for some reason I am always the 1,000,000:1 who gets the "rare" side effects). I've had hair loss, abdominal issues, extreme photo-sensitivity (which brings its own problems in copious amounts of sun block and low vitamin d levels), blah, blah, blah, etc, etc, etc.

    Unfortunately, the way the NHS works in the UK for conditions such as these is that unless there is a reason not to (such as allergies to drugs or contraindications) the cheapest treatments get tried first - I can see some logic in this as who knows which treatment is going to work for which individual BUT it didn't work for me (and wouldn't have, if you read the research and guidelines), so I've been getting increasingly worse and worse whilst the consultants keep changing my medications.

    I can cope with the joint pain most of the time (I don't take pain killers as, yep, I get the extreme side effects from them which are worse to deal with than the joint pain) but the fatigue is an absolute killer. Exercise actually helps loosen the stiff joints, so I've been walking as much as I can. cycling as much as I can (although I've had to cut back a bit, due to the fatigue and the awful weather) and I've taken up running this year.

    I started going to the gym last December as I'd been told that I needed to do strength training to help my joints. And I loved, loved, loved it. Had no problem with getting up at 5am to go and do my workout. Until about 3 months ago when my arthritis got so bad that I just couldn't get up at 5am. It was physically impossible. I'd sleep through the alarm, or switch it off in my sleep. I hated going to the gym later in the day (I prefer an empty gym) so it got to a point where I stopped going. Each night I'd think to myself, "I am getting up in the morning to go to the gym." and every morning I'd sleep through the alarm. Then I'd wake up, furious with myself. But I couldn't change things as I was just so tired.

    I cannot describe the fatigue. It totally dominates body and soul. Looking after a newborn who needs feeding every two hours (and then takes an hour to feed) was a breeze by comparison. I couldn't see an end to the fatigue, ever, especially when the last time I saw the consultant, he said that there were at least another ten medications available to try :(

    Three weeks ago, after a six-week wait for them to be prescribed and dispensed/delivered, my meds were changed yet again, to a different type of drug. By this point, over half of my joints were affected by the inflammation and I'm still getting worse. So I start the drugs, with very little enthusiasm or even slight hope that they'd work. I don't appear to be suffering any side effects, after being terrified about side effects by the nurse who was present when I injected the first dose (the nurse was precautionary in case of anaphylactic shock) until a couple of weeks later when my arm and hand went numb (yep, a "rare" side effect that indicates that nerve damage). Got checked out by a doctor who said that it was the median nerve into the hand being compressed, either because of the arthritis/inflammation in my wrist or water retention due to the new drug but that he was happy that it wasn't the drug causing nerve damage.

    Anyway, the issue resolved itself over the next few days, I've been continuing the treatment and my psoriasis and arthritis have actually been getting better. My skin is almost clear (I've had psoriasis for the last 30-odd years and the only time it's been this good before have been during pregnancy when the immune system is naturally suppressed). People don't stare at my skin (not that I cared, it was just another "thing" to deal with from those who lack knowledge). I can walk virtually pain-free (getting better day by day). Cycling is easier. I feel more like me, rather than the person who was suffering with this overwhelming, horrible, tiring disease. I'm not quite as fatigued either and I feel pretty good in comparison to recent times.

    But I digress. Last night, I went to bed, yet again thinking, "I am getting up in the morning to go to the gym." but not really expecting to :(

    Woke up this morning BEFORE the alarm went off (despite a late night, later than I wanted) and got out of bed the minute the alarm went off. I was in the gym by 5.25am, hitting the weights again.

    And I absolutely loved it. I had to lower some of my weights a little, but I was there, doing it. I was sweating like a crazy thing by the end. My muscles are sore and "glowing", I have no doubt that I've gained weight due to water retention but I don't care, I really don't!

    I WENT TO THE GYM!

    And to those who saw me as I left, yes, I probably did look like a crazy thing as I just couldn't stop grinning, I was so happy to be back there.

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