Ok so here is my normal, my new normal since 2014. My symptoms are silent to others...mostly.
Some days some things are more bearable and other days some are severe and I just don't know what each day will bring. I take pain killers every day just change the dose as required. What I do know is the more activity I do and if my stress levels rise the symptoms get worse. But always the bloody aching legs at night and no amount of pain killers help. About 4 months ago I started taking some supplements and they are terrific. Instead of crawling into bed for 1 to 2 hours every day after work I just need a quick nap sometimes so they really help with the fatigue. Today is a recovery and preparation day. Tomorrow will be too. Bed all day today just getting up now and then for essentials. Also I have another busy week coming up so I have to make sure I rest enough to be prepared. So this is my every day normal life and I think I now manage it quite well. Despite it all I'm very happy, I love my family, friends and job and I appreciate all the support I get from everyone. Till tomorrow Keep smiling Sjogrens Jo :) Thursday, the end of my working week and a bloody busy one. Got home from work with legs and back aching so much that I couldn't walk upright. a half an hour nap followed by a nice hot spa and now feeling relaxed and ready for dinner and DDD (daily dose of drugs).
Hey anyone who is reading this, it's my first attempt at a blog so go easy on me!
So I don't know why I am doing this but just feel like I need to for some reason. I guess I want to share the ups and down of Sjogrens Syndrome. my new normal. I won't go into the carry on over the many months prior to diagnosis in November 2014 but will share the poem at the end of this blog written 7th June 2015 that should give an idea of my mental and physical state at that point in time. The only thing I want to say today is that I've now been living with this mostly hidden autoimune disease for near on 3 years. For those out there with auto immune and other diseases that can't be seen ... cheers to us and what we go through every day. Keep smiling, Sjogrens Jo :) Pain, pain go away Don't bother coming back another day As if, oh well, I'll say it anyway! The doctor he said 'it's ok you're not crazy' You are sick, yes you are, it's not being lazy To get this diagnosis it took eight months long It was a relief to find out what was wrong Sj?gren's syndrome, sounds kinda odd An autoimmune disease - well what a sod! I try to explain but I can't get it right The dryness and fatigue, but I have trouble sleeping at night At times my joints ache, especially my knees The brain fog, a gurgling stomach, hear my pain please Now and then a strange ringing in my ears Tingling and headaches, this disease brings out many fears My teeth aren't so great since the dryness set in I was frightened of eating and I got so thin Valium has helped me with that Now I just don't worry, doesn't matter if I get fat! I work just as hard as I possibly can Spend time with family, especially my man I'm so proud of my son, he's handling this well When I'm flat out on the couch, his smile shows he can tell That I'm just too tired to chat, he'll leave me to nap for a spell I'm lucky my friends are supportive and kind They listen to me whinging and don't mind when I whine Most nights I'm in bed by eight or nine Just can't do any more, I know when it's time I may not sleep, just rest instead In my comfy and warm bed At least now the fatigue isn't quite so bad Because the medication has helped, also I don't feel so sad I used to get up and beg my body to get through the day Now I have a shower, get dressed and think 'hey' I might just make it through work today! If I don't eat my cereal every day It's through the rear end that I will pay! Dairy isn't good, I know it's a fact But I love chocolate and ice cream I'll just put up with feeling smacked Others ask me 'are you ok' I think 'how can I explain what I feel today' My body is sick and I don't feel well I say 'I'm alright', I know they can't tell Not all days are bad, some are so-so And on days when I feel good I want to go Out to the shops, a movie or lunch Or maybe all three with my honeybunch I never know how much energy I'll have But after four day of work I know where I'll be In bed for two days ... Recovery! So on Sunday most weeks I can enjoy some good things in life Time together, just husband and wife I can confirm that the spoon theory is really true Need to make good choices in what I do Remember not to push myself too hard today Otherwise, tomorrow I'll pay The tablets and devices are quite good They make me feel a bit like I should But the cure is not here yet for this disease I pray for it every day - yes please As they say 'it could be worse' I know they are right, silly me - yes of course! I could have cancer that's what they say Foolish words, this could happen one day Do they think this makes me feel better quick I should be rejoicing then because I'm not really that sick! My moods they swing, up and down Life really is like a merry-go-round I feel blessed and betrayed at the same time Yes, yes you are right I'll be just fine I'm trying hard to get used to the new me I just wish I was how I used to be Don't think for a minute that I want any pity Just understand, everything's an effort, even a trip to the city My body can't cope with too much activity When I've had enough I have to look after me Looks like i could go on and on for ages I might well fill up many pages But I think I'll stop here and take a rest So tomorrow I might just be at my very best! |
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