Fibro in my world

 

Rhumatology department at Neath Port Talbot Hospital refered me to the Fibromyalgia Clinic. I had a phone call from the clinic yesterday, and thought I would do a blog to show how my life an Fibro co-exist.

I can tell you I have reminders on my phone and bits of paper pinned to the wall. Forgetting what I got up to do is the norm for me, as is forgetting words.

Here we go then with the first night time report and the start of the day.

Thursday 1st August: A night of interupted sleep, was too hot in the flat to sleep, the downside of a lack of sleep is a body that won't function as it should, so lets see how the day pans out. Pain this morning is at about a 5 out of 10, I took all my dose of Gabapentin yesterday. The day continued, and when I went to bed the pain had risen to about 6 out of 10.

Friday 2nd August: In the early hours of this morning woke up to fibro tingling, but because I took all my doseage of Gabapentin, it didn't turn in to much. When I got out of bed my pain was at around the same as where it ended last night, 6 out of 10. It's Nero day today, dog sitting duties, he seems to know how I am feeling and knows when or if I have taken my tablets and nudges me to remind me.

Saturday 3rd August: Woke up about 5am in agony, dispite having all my metformin. Its been 8 days since my Imraldi injection. Top part of back, neck and shoulders in agony and feeling sick with it, pain at around 8 out of 10. Finally out of bed by 9am, took a bit of time to get moving.

Sunday 4th August: Bit achy today, shoulders and top of back, right hip also playing up a bit today. Pain level at about 6 out of 10. By end of the day pain level about a 5 out of 10. Feeling tingly in most places as day went on, so have made sure I have taken all my gabapentin, just incase. 

Monday 5th August: Woke up not too bad pain wise about 5 out of 10. Feeling very lethargic, hardlt no energy, but must get to the chamist to pick up my metformin.  Well that was an effort, feel like sleeping now I am back. Aches and pains increased to about 7 out of 10, just want to sleep. Taken the last two of my daily gabapentin before heading for bed at about 8pm.

Tuesday 6th August: Needed a little extra time in bed, finally up at about 9:30am. Right shoulder and arm feeling awful this morning, feels a little like a dead weight. Pain level this morning at around 7 out of 10, feeling sick with it. Feels like Fibro kicking in. I have things to get done today, so I must plough through it!

Wednesday 7th August: A bit achy 5 out of 10 on the pain, right knee playing up a little today, when I went to the chamist I needed to use my crutch. As the evening came in so did a headache. Pain as I went to bed at about a 6 out of 10.

Thursday 8th August: IMRALDI INJECTION DAY Started the day 5 out of 10, got Nero today. Nero knows I'm in pain and nudges me to remind me to take my gabapentin, how does he know when the pain is bad?. Feeling a bit tired by mid afternoon, after Nero went home at 4pm had a nap for a hour. Before bed pain was about 7 out of 10. 

Friday 9th August: Pain elevated to about 8 out of 10, must be fibro causing the spike as had my Imraldi yesterday, seem to have a mind fog as well. Not a good start to the day as have things to get done. As morning went on the 8 went down to around a 6 out of 10, so at around 11am managed to make a start on the day at last. Before bed pain at 6 out of 10. Must put in my prescription.

Saturday 10th August: Felt a bit groggy when I woke up, bit achy but nothing too bad - about 5 out of 10. Went to Tircoed to do my radio show in the evening. When I got home pain was at a managable, just, 6 out of 10.

Sunday 11th August: Pain at 5 out of 10 this morning, went up to 8 out of 10 as the morning turned in to the afternoon, think I may have over done a morning walk on the hill. Sometimes you just have to push yourself to do things.

Monday 12th August: After yesterdays increase in pain I am sure my Fibro decided to hold on to it as my pain was at around 8 out of 10 again this morning, normally it would go down after a sleep. After taking all my dose of Gabapentin pain before bed went down to 6 out of 10.

Tuesday 13th August: Pain this morning at 5 out of 10. Went to have my bloods done today, to see if antibodies had built up making the Imraldi less affective. Had notification from Patients Know Best, checked to see what the blood test had shown. Red Blood Cells increased a little, and White Blood Cells reduced a little. Not sure what that means, not to sure what shows my body has created antibodies, so will wait to hear from Rhumatology. Pain before bed 6 out of 10. Must pick up my prescription tomorrow.

Wednesday 14th August: Woke up feeling lethargic, so went back to bed for a few hours, still not feeling right, but getting there. Pain this morning about 6 out of 10, some brain fog. As it comes round to bed time pain this evening is around 5 out of 10, so all in all not a bad day.

Thursday 15th August: Not feeling too good this morning, head feels like it is up in the clouds (aka brain fog, feeling forgetful!). Woke at about 4am to Fibro twinges, now my back is in agony, hips hurting, shoulders and arms, and a thumping headache too. Pain at a 9 out of 10. I MUST go out to get my meds from chemist, so the day must progress, lets see how it goes then! Weather making me tired.... Early night for me, feeling groggy - pain before bed 6 out of 10.

Friday 16th August: Very achy this Friday, trying to do exercise to loosen up but pain ensues, had 2 Gabapebtin since waking up with not much effect. Pain currently at about 7 out of 10. It's not even noon yet, and in need of my third and final gabapentin.... must hold off on that, I have paracetamol somewhere, but where? I also have turmeric and black pepper capsules that a friend gave me that he swears by - I should give those a chance, better than chamicals I guess! I was taking CBD drops, but the cost was getting out of hand!.

Saturday 17th August: Woke with a pain level of around 6 out of 10. Developed a headache as the day went on with a pain behind the eyes, had to cancle doing my show as didn't feel like I could drive.

Sunday 18th August: Pain at about 7 out of 10, just managable. That headache from yesterday is gone though, thank goodness. Went to Bristol with Carl. When I got back was very achy, mostly top of back and shoulders.

Monday 19th August: Well, after Bristol, woke up qith pain at around an 8 out of 10, probably too long driving being the cause. Was a nice change though, getting out of the flat. By bed time pain reduced to about 5 out of 10.

Tuesday 20th August: Not feeling too bad today, pain at about 5 out of 10. Went up to Tircoed to do something, but brain fog set in and couldn't remember what I went for!

Wednesday 21st August: Woke up at 5am thanks to tingling all over, aches and pains - 8 out of 10 with the pain. Not feeling good today at all. Went to bed a bit later than normal as was watching the DNC convention on CNN, they really go all out on these things, Stevie Wonder was singing on it, and a number of famous people were talking including Oprah Winfry and Bill Clinton!. Pain at bed time was a much lower 6 out of 10.

Thursday 22nd August: IMRALDI INJECTION DAY Woke up late, 11:30am as didn't go to bed until 2am!. Pain at around 6 out of 10. Little brain fog this morning, I need to get more milk, also need to do my Imraldi injection today.

Friday 23rd August: Well after my Imraldi injection feel a little better, pain this morning at about 4 out of 10. Taken all three of my Gabapentin throughout today, before bed the pain was at about 5 out of 10. A good day.

Saturday 24th August: Pain this morning at about 6 out of 10, a slow start to the day, lower back and right hip playing up. Took me a while to be able to get down the stairs and out of the block. Managed to get to Tircoed for the end of the Tircoed Village fete, and done my radio show. When I got home felt tired so was in bed by 10pm.

Sunday 25th August: Pain this morning at about 5 out of 10. Feeling very drained, probably over did things yesterday. Bed by 9pm, pain at about 6 out of 10, with some brain fog as the day went on.

Bank Holiday Monday 26th August: Pain at about 6 out of 10, feeling tired so didn't manage to get out of bed until 11am, was back in bed by about 6:30pm, very drained. Pain didn't raise about the morning 6 out of 10 though.

Tuesday 27th August: Up early, 6:30am, pain at about 6 out of 10. Got Nero today, he reminded me to take my tablets, and kept sitting by my side, he wouldn't leave my side at all. Pain more or less stayed the same during the entire day, and huge thanks to Nero for looking after me.

Wednesday 28th August: Before I went to bed last night, saw a bit on the news about ME / Chronic Fatigue. Interesting. This morning was another slow start to the day, woke at 6am but didn't get out of bed until 9am, feeling lethargic, pain at about 5 out of 10.

Thursday 29th August: This morning was another slow start, feel just as tired now as when I went to bed, feeling in great pain all over, about 7 out of 10. Have got an eye appointment early afternoon, Dad is getting me there and back. I MUST get this 'feeling tired' sorted out, it really is annoying me. Got back from the hospital and was in bed by about 7:30pm, had no energy left. Pain remained at about a 7.

Friday 30th August: Left eye still blurry, not as bad as it was, right eye has cleared up. Pain this morning when I woke 5 out of 10 around most of my body, but I think I slept on my right side as my shoulder and hip seems to be in more pain 7 out of 10 on that side. Did get out in the garden to potter about, saw the cat from downstairs and gave it some fuss, it then followed me about the garden keeping an eye one me.  

Saturday 31st August: Finally my left eye is clear, that took a while to recover from the drops! Still feeling a little tired, not too sure why, so will fire off an email to the doctors, can't be dealing with the tiredness/ Pain wise today its been about a 6 out of 10, did my radio show this evening (for those who have never heard it check out www.philengland.com/in-the-groove)

Sunday 1st September: How are we in yet another month already? feeling exhausted rather than tired today, no energy to do much, so think its a day for catching up on some missed tv. Pain today has been at about a 6 out of 10 to start, rising to around a 8 out of 10 after putting the recyclking out.

Monday 2nd September: Had email back from doctors, appointment to see them 10:30 on Wednesday, also put in prescription for my metformin and blue inhaler yesterday. Pain during today at aroind 7 out of 10.

Tuesday 3rd September: Had to push myself to get out to the chemist, and needed a few bits from the shop, ended up in B&M in Llansamlet, really helpful staff in today - couldn't fault them. Pain to start the day was at about 7 out of 10, after popping out to shop and chemist was at a 9 out of 10. I MUST phone Specsavers*! (*appointment made for Wednesday next week, 8:50am)

Wednesday 4th September: I went to see the doctor, took a bit of effort to get there as felt zapped of energy again this morning. Have to go and get bloods done to find out why I am feeling tired. Pain at about a 7 out of 10, I am due my Imraldi injection tomorrow.

Thursday 5th September: IMRALDI INJECTION DAY Feeling wiped out today, no get up and go, but will try to plod on with things. Pain started at 6 out of 10, at end of the day it had risen to 8 out of 10.

Friday 6th September: Not too bad today, a little more energy than yesterday. Pain at about 4 out of 10 first thing, going up to about 5 out of 10 by evening.

Saturday 7th September: Another Saturday, pain to start the day 5 out of 10. Show today on Radio Tircoed, felt exhausted after it, and higher pain at about 7 out of 10.

Sunday 8th - Friday 13th September: Update break, hey, even I can't keep updating a blog!

Saturday 14th September: Pain at about 6 out of 10 this morning. Off to Radio Tircoed for about 4pm to train a few people up on Myriad system, then do my show. Felt totally drained when I got home. Pain at about 8 out of 10. May have over done today. You know, going to do something while good to be busy, it totally can floor you mentally and physically.

Sunday 15th September: Off up to Radio Tircoed today, pain first thing at about 6 out of 10, didn't sleep too well last night, but must get to Tircoed for about noon. Done a bit more training then covered for Karl between 1pm and 4pm, the emails didn't want to be opened this afternoon on the main studio computer, lucky one in the production room was letting them be opened!. Not a bad show, but by the time I got home felt drained and my pain was at about 8 out of 10.

Monday 16th September: Pain at about 6 out of 10 first thing. Off to get bloods done for diabetes and fatigue. Injection delivery later of Imraldi.