Hearing the dawn chorus

So, I heard the dawn chorus this morning for the second time in 48 hours. It really is a beautiful thing to hear, I just wish I had managed to get some sleep before it started up! Lights out at 22:15 and I was still awake at 0400. How is that even possible when one is in pain and so weary and tired? I took NRAS advice and got up, went downstairs and folded the dry clothes, stacked the dishwasher and put it on and came back to bed. It did feel good to have a change of scenery at 0230! I'm just not feeling well. Can't really put my finger on it, just not feeling well. I put everything I feel down to side effects of my medications, but I'm not sure today. I have a sneaky suspicion this is because I have run the Steroid Gauntlet, allowed the steroid honeymoon wave of me feeling like Superwomen to overcome me and I've overdone it, big style. The result, not being able to get out of bed, feeling like I have lead weights instead of limbs and actually feeling pretty rough and ill! Just what I want on a bank holiday weekend. I'm hoping that if I spend today in bed and hubby looks after the children, in his normal amazing fashion, I will be able to enjoy the next 2 days. I've decided I will definately take my Amytripltaline tonight. I need a good nights sleep and with the pain creeping back in, yes, I didn't even mention that part yet, I need to think about rest and sleep. I have been very busy these past couple of weeks, I've enjoyed having energy and being largely pain free...who wouldn't make the most of that?!

My children have been a constant delight these past few weeks too, their vocabulary is growing daily and I, loving seeing how their sentence structure is developing. They are both so different to each other and they're just a joy to watch.

I've bought a FitBit to wear constantly and I will be certainly watching what it says about sleep tracking (or lack of!) when it arrives. I'm very strict about not having mobiles or iPads with me in the bedroom and my kindle doesn't have a backlight and nothing has changed. So it's frustrating and I guess like a lot of things RA related, there may not be any rhyme or reason. It's just one of those things...in fact, as I was stacking the dishwasher at 0230 I had a vague memory of hearing my Mum doing the same thing at a similar time....now I realise why she did it too.

Steroids - phew. Thankyou.

Steroids. They've given me my life back. Hubby feels like he has his wife back and the kids are loving having a Mummy making cookies and walking them into the village and back. I have to remember to pace myself as I do tend you over do it (always been part of my personality) but I am enjoying having energy and being, largely, pain free. It's the energy I'm enjoying the most. I just have this nagging in the back of my mind, what will happen when the dose reduces again? Every week I reduce it by 5mg, this week a little bit of pain and tiredness has crept in, but nothing I can't handle. In 2 days time I reduce it again to 20mg daily, then 15, 10, 7.5...then what? I hope and cross my fingers and toes that the injectable Methotrexate will prove to be more effective with the Hydroxychloroquine then the MTX tablets. Whilst I'm on the subject of MTX injections- OUCHIE when I inject into my thigh! Wow. Glad I've done my 2 weeks of those, back onto my tummy now. Anyway...where was I...oh, yes, Otherwise it'll be the triple therapy of Sulphasalazine added in. One thing that I keep thinking back to is a conversation hubby had with my consultant regarding the medication and how it works. I remember Rheumy saying that the RA meds should put me into remission and I should be as well on them as I am after Steroid injections. Interesting that I haven't responded to the steroid injections as well as the tablets! Who knows! I'm using this time of the Prednisalone Honeymoon to enjoy being a Mummy, cooking cookies with the kids, walking with them to the local village and tidying up the house, catching up on the chores that have amounted over the last few months. I've started cooking again, which I have always found therapeutic and I'm enjoying being a Mummy, Wife, Sister and Friend again. 

I am worried and scared about reducing the Prednisalone but I do understand why it must be done. Worrying about where the next pain would be, taking tramadol, relying on pain relief to get through the day, not to mention the relentless fatigue, feeling like I'm wading through treacle, the stiffness and swelling is an exhausting way to live. 

But in the meantime, I will enjoy my Prednisalone Honeymoon time. Full stop.

Being on steroids

I survived, The kids survived, the house survived. DH is now home and all is back to normality. I've managed 2 bedtimes on my own and I'm chuffed. I'd like to take all the credit, but I can't. Most of the credit must go to the prednisalone, the 30mg a day cursing around my body. Amazing stuff. I feel like superwoman! I even thought I'd be able to weed the whole garden once I'd put the kids to bed at 12:30, how crazy is that? But, I saw sense, you'll be pleased to know and decided to retreat to the sofa and watch TV. I attempted to do a little more of the jigsaw I found, it started it when I was pregnant, so not touched it in almost 2.5 years, but my mind wasn't on it. I just lay on the sofa and fell asleep. The Rheumatology nurse did tell me to Pace myself. Even my lovely Homestart lady rang me to see if I was ok, bless her. To be honest, without the steroids, I really would have struggled. I'd have managed, as my beloved sister said I would, but it would have been a up-hill battle, filled with tears (from me) and a lot of television for the kids. But we went for a couple of walks in the sun, went up to my In-Laws, who offered to give the kids lunch and generally just lazed around. 

I have found the steroids have improved my appetite and I've taken no pain relief for 2 days! Whoop Whoop! The appetite, wow. I know the Rheumy nurse warned me about my appetite picking up, I did carry twins for 34 weeks so I do remember, but even I've been taken by surprise. I don't keep treats in the house (I eat them) so I've just snacked on anchovies, olives and feta cheese! I've been craving anchovies since the whole methotrexate thing and appetite drop in March, I have no idea what that's all about! But it does amuse me. 100% not pregnant! I can eat a whole pack of anchovies in one sitting (they have to be marinated in vinegar, garlic and lemon juice though), DH can't understand it either. My calcium has been low and after research it does say that fish containing bones which you eat co actin more calcium...perhaps my body is telling me something?!

My bedtime sleep still isn't perfect, but hell, with improved energy in the day, no pain, improved appetite (no nausea), life can't be 100% perfect! Sorry, but it never is. I can sacrifice a few hours sleep at night if I can function well in the day.

Now to start another week, a busy week, of being a stay at home mum to twins. Only this week, I have no pain and more energy. Hurrah for steroids!

Steroid tablets- pros and cons

Up until now I've had 3 large steroid injections, 2x 160mg and 1x 120mg, each about 6 weeks apart! So the flare up which happened last weekend was the culmination of there being no more steroids in my system. Nudder, none, zero. Not good when the DMARDS haven't kicked in yet. So, my lovely rheumatoid nurse decided to put me on steroid tablets, 30mg every day for a week, then reduce accordingly. So I took my first dose on Wednesday, noticed more energy on Thursday and more again yesterday. Still in pain (don't understand that?!) but more energy. Always important when dh is away all weekend up in London working. My first weekend without dh's help since my diagnosis in December. My wonderful MIL and her partner had the kiddies over night last night and until nap time today which means I had my first ever night in this house on my own! No kids, no husband and even no cats! So, I prepared myself for a good nights sleep. Got into my wonderful bed after completing some chores, so I didn't lie in bed in the morning worrying about doing them, read for a bit, as usual, then turned out light at 2245. I lay there...no sleep...tossing and turning. Took another tramadol 😏 for knee and shoulder pain. Still not asleep at 00:25, then I must have dozed off as I woke at 0345 then 0715 then 0930. Seriously! On the one night I have the whole king sized bed to myself, no kids and the insomnia side effect from the steroids kick in! Not impressed. So now I'm in bed, having had my meds with breakfast watching Saturday Kitchen writing this. I've had a text from MIL saying kids slept 7pm-8am (they always sleep really well after nursery), they've had a bath and are just off out for a walk. Perfect for them. They're being dropped back here just in time for their next nap (some time between 12:30-1300). They'll sleep well then too! Yay! Anyway, back to steroids, so, my appetite hasn't picked up yet, I've got insomnia, I'm still in pain but I have more energy. Not a bad thing when I'm on my own with 2 bouncy 2 year old twins! To be honest, I'm a little confused as to why I'm still in pain. Maybe after a couple more days. Perhaps my calcium is still low (my doctors receptionist clearly didn't pass the message on to the nurse who took my blood that I needed my calcium re-testing as it was low in March), because I know that low calcium can cause joint pain. Ho hum. Plus, have you taken steroid tablets? They are small and white, boring looking tablets, in fact they are the smallest of the tablets I take in the morning, but they taste the worst! Bitter and horrid. What's that all about? My poor Earl Grey tea is ruined every morning by those little horrors.

I have to admit, as much as I was grateful that MIL took the kids for the night, the house was very quiet. Just little old me. Missed that final check on them as the kids sleep peacefully, sprawled out in their cot beds, as I check they aren't cold and the gentle restful breathing they have. Love that feeling, that they are sleeping peacefully. I'm looking forward to them coming back and getting cuddles from them. They really do give me the best cuddles and therapy.

Pondering Mums world too at the most inapproprate moments....Mum would have laughed

Nappies. The bane of every parents life. For a Mummy of twins...its been a very expensive bane adn one that is becoming more painful by the day. When I was diagnosed with RA I thought about my Mum, in a wheelchair despite having 10's of operations to have joint replacements and spinal operations, but I had never really given any thought to how she got there.
Mum was diagnosed in 1978 or 1979 (Dad is a little hazy), I was born 1981 and my sister in 1982 so we grew up being raised by a Mummy with RA and serious sero-positive RA at that, a strong lady with a wicked sense of humour who never went into remission and trialled most of the drugs available to us now (including Enbrel). Mum had her first hip replacement in 1985, bless her. So, this morning as I crocodile wrestled my ds (dear son) to the ground on the changing mat attempting to grasp his legs with my left hand and cleaning with my right whilst singing along with Raa Raa the naughty lion (CBeebies programme), I thought about my Mum (sorry Mum, not the most appropriate moment). Changing nappies has become very painful, the very movement of holding the legs in the air whilst I clean and change seems to twist my wrists and fingers in ways that before, never bothered me. But now...Ouch! My dd (dear daughter) is a typical girl, doesnt like to be dirty and will attempt to hold her legs in the air, whilst pulling off her socks of course (which I have to find later and replace), but at least she tries to help her Mummy who is singing through this simple task "Ouchie, Ouchie Ouchie Ouchie". I sing alot, random words, but as long as my kids laugh and find me funny, ill keep it up.
Mum must have struggled with nappies too, at least I have DMARDS cursing through my veins, although not quite working well yet, Mum had steroids. So although she was pumped on steroids to control her RA the damage was being done, so it must have been as painful for her, perhaps even more so. Never thought about Mum like this before, my sister and I just accepted it, but since my pain has been ramped up I've been thinking about Mum alot and the advances in medicine that we have seen. Numerous DMARDs and 9 biologics (at last count) on offer to us, with research being done all the time. All Mum had was steroids and pain control. So as scary as it is for me ann how I wish I could talk to her about it, it must have been terrifying for Mum. Changing nappies is just one of the many daily (or 3 or 4 times daily per child in the case of nappy chnaging) which I find so hard and painful. A year ago, I never gave these tasks a second thought. Its just another way that RA has affected my life.
In the meantime I will look forward to the end of nappies...although toilet training twins...hmmmm...think id rather have the wrestle thanks :-)

Lessons learnt

Today's appointment Went well. Not been put on Biologics but I have been put on steroid tablets instead of having huge 160mg injections every 6-8weeks. Will be put on Sulphazalazine if the MTX injections don't improve me (apparently the MTX injections are up to 30% more effective...?) and the steroids will be reduced week on week. If the pain returns then they know the injections havnt worked and they'll add in Sulpha, if I manage to come of the steroids totally then they know the MTX has worked. So, I have a plan, which at the end of the day, is all we want, isn't it? To be heard and to know what the health professionals are going to do to help us. If there is no improvement on Sulpha after being on that, then I will considered for Biologics. That'll be around October. But I'm looking forward  to these Prednisalone tablets 30mgs kicking in! Very positive! We talked about exercises for my hands and fingers, not wearing my splint all the time (taking off every hour and warming in warm water with exercises) and hydrotherapy and Pilates. Was great to look to the future, so even though I'm shattered and achy, I can look ahead with a plan.

The only negative I've taken away from today is the Sero-negative diagnosis. I'm finding it very very very frustrating. My blood tests are all Normal. My X-rays are all normal (actually very pleased about that!) and the nurse saw no swollen joints today. So, today the diagnosis and the pain is based on my honesty. Now, I'm an honest person and my dh (dearest hubby) sees my pain and it's real. Really real. But I struggle with it as I'm a women of fact. Pure fact and I like clear diagnosis, I always did in my previous career and I'm happy with loads of medical stuff that's unknown but for some reason I'm really struggling with this. I not saying that I'm doubting the diagnosis, I have to trust my Rheumy and the team (afterglow, my Mum trusted them all) and they are the experts, I'm just finding it hard. I have had raised inflammatory markers in the past, but it's all normal now. It's just weird how I can be in so much pain, feel so exhausted and poorly and not have any raised markers. I also find RD (rheumatoid disease) very odd...why does it move from joint to joint? Why has it started? 

Anyway, overall whereas yesterday was THE most terrible day, today has been much more positive. Appointment with nurse, was encouraged to have lunch with dh out whilst kids were asleep and safe with FIL and then my lovely Homestart lady came around to help me. We always have a good chat before the kids wake up and then we all made cakes. It was great to do it with her and gain confidence with baking with 2 year old twins! I love baking and I'm looking forward to doing more with the kids in the future when I'm not feeling like leaving the house, they also sat and drew for over an hour. Such contented little people and I'm so proud of them.

So, looking back on the day....I've learnt and re-remembered 2 valuable lessons. 

1) mess doesn't matter. It's just mess and as long as my wonderful children are happy, mess can be cleaned up.

2) Dont sweat the small stuff

Night 😴😴😴 

Big Day tomorrow after a long day today

So. I was diagnosed with sero-negative Rheumatoid Arthritis in December and started on methotrexate (MTX). Then in January my Rheumy upped my MTX to 20mg from 15mg and added in Hydroxychloraquine, 200mg bid. I was admitted to hospital on Mothering Sunday weekend with a suspected flare up (high temperature, not able to move, suspected Mengingitis by A&E, high CRP, dehydration) and I've not responded to the current treatment very well at all. Frequent flare ups, fatigue that's crushing, pain, normal stuff really. I'm finding being a Mum to my beautiful 2 year old twins very very tough. Today, has been especially hard after a terrible weekend for me. Came back from Portugal, we went there for 1 weeks holiday, on Saturday and have been terrible every since. Had my wonderful husband's help for over a week so today was tough, without his help. Just turned on the TV and they watched TV. I feel so helpless and fed up. Seeing the lead Rheumy nurse tomorrow to discuss Biologics, fingers crossed. I was started on MTX injections a couple of weeks ago too (luckily injections don't faze me as I had 2 rounds of IVF for George and Sophie and I was a veterinary nurse for 8 years) and I saw the most wonderful nurse (one who was kind to me in December, who I mentioned in a post then!). She remembered my Mum, remembered how Poorly my mum was, in fact all the rheumatoid nurses at the hospital remember Mum. How lovely was that, for me to hear, just wonderful to remember Mum, and discuss her fabulous sense of humour! She knew how to laugh at her Rheumatoid and the trials and tribulations it bought her. Anyway, because they remembered my Mum, the nurses would like me to start on biologics as they don't think I've been hit hard enough with drugs. So tomorrow mornings appointment is an important one for me. Biologics vs another, 3rd DMARD...I will find out tomorrow. Fingers crossed I sleep better then last night. Even Amytriptaline didn't help me last night, plus paracetamol, naproxone and tramadol...Life will get better...?! It must do?! My neighbour and my cleaner (well, she's more like a housekeeper/kids entertainer) had to cook tea as I couldn't even peel a potato. A low point.
Anyway, if you've read this far, Thankyou. This RA journey is a tough one. Oh, and im thinking of writing a blog as I find writing theraputic. Plus, I've had to wave goodbye to a career in Midwifery and face facts, that will never happen....the realism of RA is striking me.