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. Energy level depleated as day went on. 

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. Feeling tired, no energy as day went on.

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. Been a lazy day, get up and go, got up and went! Pain before bed about 8 out of 10.

Tuesday 17th September: Pain at about 7 out of 10 to start the day. Found out high white blood cell count, and low red blood cell count. The high white blood cell count means my body is fighting something.... but what? Went to Tircoed to do a little training again this morning. Felt a bit down after, mind needed a break from its self, went over Gower for a bit of fresh air, also went to Dunvant Farm Shop.

Wednesday 18th September: Pain this morning at 7 out of 10. Had Nero here today, he and I snoozed most of the day away, didn't sleep too much last night. Was told by nurse not to worry, and a doctor will talk to me next week about the blood results in more detail. Worrying is like a train, dont get on until you know it's destination!. As day went on felt more and more tired.

Thursday 19th September: IMRALDI INJECTION DAY had Nero again today, he's stuck by my side, he knows when I'm feeling low. Took me a while to get moving this morning, could have remained in bed, pain at about 7 out of 10, startted to reduce after injection, but feel washed out. I'm fed up of this. Had letter today from Occupational Health, lets get a date booked and see how they can help. Somewhere around here I have print offs that Ami gave me about pain management and other things. Got phone consultation on Monday 14th October.... thats a long way off, but its on my memory wall!

Friday 20th September: Woke up with pain at about 5 out of 10. Covered breakfast between 8am and 10am on Radio Tircoed today, felt more and more drained as the time went on, and really felt it too. Got home and had a nap.

Saturday 21st September: Not feeling that good, but have a show to do. Pain at about 6 out of 10, which seemed to be where it stayed all day. Felt tired when I got home.

Sunday 22nd September: Pain at about 6 out of 10 today, risen to 7 out of 10 as the day went on.

Monday 23rd September: Pain high this morning 8 out of 10, mind not really on things, terrible today, seems like bad Fibro attack. Terrible mind fog, can't concentrate today at all. Spent most of day in bed.

Tuesday 24th September: I'm having to ask my self has my mind been on tasks fully, and have to say, no it hasn't.

Dad isn't well, I know Fibro is becoming a pain for me.
I'm seriously thinking I have to rethink just what I am capable of doing, what is best for me and for others around me. Can I really give my all to what I am doing?
I am wondering if I can, and in all seriousness, I don't think I can.
Yesterday's massive Fibro attack made me realise I haven't got this in the least. I caved in, I went back under the duvet 😢
Today a call via WhatsApp cemented my thinking. I've been really trying but I've let people down. I've been diving my all as things have been getting worse. I could have swore I told people about issues 😭
Finding out this week my Dad has had bits found on his lungs, and the hospital is pushing for his appointments.
I myself need to manage the Fibro, got appointment with my GP later this week, and Fibro in Mid October.
I've been thinking and talking, will keep up with my show, do need some positivity in life. I will also keep up with my Islands FM show too.

Wednesday 25th September: Still feeling tired, but trying to do things. Pain at about 6 out of 10 this morning, as day went on it went up to about 8 out of 10. Not a good ending to the day, as headed for bed at about 7pm.

Thursday 26th September: Pain about 5 out of 10 first thing. Had Nero today, he has a way of calming me down, bless him. Also a few parcels came today. As day went on I felt more and more fatigued.

Doctor phoned about my bloods. I am wondering if the white blood cells are fighting Fibro, Fatigue and Ankylosyn Spondulitis?

Friday 27th September: Had to pop to Tircoed for radio things. Everyone is really understainding on how I am and with what I am going through. Pain started at about 6 out of 10, by late evening rose to 8 out of 10, but think I over did things.

Saturday 28th September: Needed to escape the walls of my flat. Went to Hereford with Neil. Was good to escape. Pain at about 6 out of 10 all day, which dipped to about 5 out of 10 after some CBD oil for about a few hours. Will get some more of it I think. Was totally knackered after it, but not suprising!

Sunday 29th September: Well after CBD oil before bed seemed to have a better nights sleep. Pain at about 5 out of 10, by end of the day was about 7 out of 10. Not feeling too bad, bit tired, but it was a long day yesterday.

Monday 30th September: SA RADIO LIVE launched at 7am, woke up to no power in the flat.... electric had tripped in the night. Pain at about 6 out of 10 this morning. Heard from my Dad, he has appointment next Wednesday ay 1pm, cant drive after it or be alone, so will have to stay at mine after it.

Tuesday 1st October: Another month gone, pain at about 6 out of 10, not sure where my head is today, forgot why I went in the kitchen twice and in the bathroom 3 times. Been to chemist, got my new diabetic injection. Dad has the date for his radiation scan, next Tuesday, then on Wednesday another thing to be done. All go isn't it.

Wednesday 2nd October: Pain at 7 out of 10, not had any CBD oil as yet. Feeling tired. After CBD oil pain did subside a touch, went down to about 6 out of 10.

Thursday 3rd October: Its injection day, woke up with pain at 8 out of 10, had sleepless night. Felt the need to escape in to nature so went to a mountain side, really needed that escape. After getting back felt very washed out, totally shattered, very drained.

Friday 4th October: Pain not too bad at 5 out of 10 first thing, rising to 7 out of 10 by late evening. I had to pop up to the studio this evening to show someone how to go in to automation. Hope he remembers for next week.

Saturday 5th October: Slept in this morning, needed it after yesterday evening and know I've got another late one this evening. Pain at about 6 out of 10 this morning. Hannah brought Nero up, so had him with me most of the morning and afternoon. Went up to the studio at about 8:50pm, had forgot my phone so had to go back for it. Tripped over a bit of branch getting from the car to the studio door, not a good thing to do. Pain when I went to bed was at about 8 out of 10, there is a reason why it was so high, I agrovated it by missing a step leaving the studio and also missing the kerb!.

Sunday 6th October: Woke up at about 5am in great pain, think last night didn't do me any good, pain at about 9 out of 10.... damn it!

Spent most of the day in bed, finally getting up at about 4pm, well I did have to sort out my rubbish and such like. Pain before I went back to bed had reduced to around 7 out of 10, probably due to the gabapentin.

Monday 7th October: Pain first thing was at about 6 out of 10. My Dad phoned to confirm things, he has got radiation injection on Tuesday and full body scan at Singleton, can't be on his own so is stopping at mine, then on Wednesday he has to go to Prince Philip Hospital for a camera down in to his lungs, again he can't be on his own so another night stopping at mine.

Tuesday 8th & Wednesday 9th October: Update Break

Thursday 10th October: Pain this morning at about a 7 out of 10, seem to be in more agony on my right side - my hip, shoulder and other areas on the right hand side are painful. Dad went home today after Nero was dropped off. Nero could tell I wasn't feeling too good, and sat by my side. As the day went on pain subsided to about a 6 out of 10.

Friday 11th October: Pain at 6 out of 10 this morning, feeling a bit sort of 'meh', its one of those 'dunno' kind of days. Had to get more milk, but couldn't be bothered, so did a JustEat. Waiting on results of Dad's tests and full body scan, not sure what it may find.

Saturday 12th October: Pain when I woke was at about 7 out of 10, rose to about 8 out of 10 at the end. Managed a light walk and fresh air. Did my radio show, felt really drained after it, sure was cold when I came out of the studio, forgot about the step when I left the building and had a bit of a thud when I missed it, that kind of jarred my back a little. When I got in uploaded my catchup and went to bed after trying to relax.

Sunday 13th October: Didn't do much today, slept a long time on and off. Pain elivated, don't think missing that step last night helped iin the least. Pain about 8 out of 10, finally subsided to 6 out of 10.

Monday 14th October: Woke up about 10am, pain at about 7 out of 10. Spoke to occupational health. Some things to do, which may be of use to you too if you do suffer with Fibro....

- Online local Facebook group, Fibromyalgia Support Group

- EPP Cymru

There is also a persistant pain clinic that my doctor can refur me too

I've finished doing regular daily updates on this blog now, but please do keep coming back to check for any future additional update - Thank You

Saturday 19th October: Feeling in great pain and feeling very run down today, not too sure why, as didn't have any warning of this. Pain at about 9 out of 10 when I woke this morning. I have joined Swansea Bay UHB Fibromyalgia Support Group