A Tough and Emotional Week…

It’s the Friday afternoon, of a very tiring and emotional week. My last post stated ‘but it will get better’… The toughness and emotion have been present all week, neither better nor worse, the outcome of the week, I think all though a hard one for me to accept initially, is probably the right outcome… So I think things will get better!

Last week I self-certified a few days off sick because my joints just wouldn’t let me keep going. Back to work on Monday… a difficult decision in some ways as my very supportive boss said as I left mid-morning on Wednesday, ‘take all the time you need and make sure your right before you come back, don’t rush back’. I appreciate the sentiment, but when every morning you wake up and feel rubbish, work or no work, how do you tell which morning is the right morning to go back? However, Monday came around, and I felt I should try a new week.

Tuesday morning I had a Women’s Health physiotherapy appointment that I had arranged whilst off, she was supportive, but as I know too, there is little she can really do. She can’t cure my RA, but she did offer hydrotherapy and acupuncture, which I have accepted. I’m happy to try anything that might help ease the pain or stiffness. I have been doing my own hydro of a fashion when going swimming, but it’s also nice to get other therapists ideas on exercises/rehab.

Wednesday was a day off (using my annual leave to break up the weeks), which worked well as I was exhausted after Monday and Tuesday, and hydro is on a Wednesday at 13.30 which would have been really awkward if I had been at work.
Hydro was lovely, very gentle, and a lot less than I would do on my visits to the pool (but at the cost of £3.80 per swim I’m afraid I feel I have to get my money’s worth!!), but it was great in the warm water to take my joints through their full range of motion with very little pain. Plus as there were ladies there with pelvic girdle pain there were core exercises as well which you can never do too many of!! Now granted… getting out the pool did suddenly make my body feel twice as heavy, but it had worked wonders on the lovely water retention that has come to fruition over the last week (Just to add a little extra size to my already fat feet…!! To think I once wanted to be a foot model!).
The physio is going to add acupuncture to my treatment plan for next week as she didn’t want to overdo it in the first session. So that will be interesting, having never had acupuncture as a treatment!!

Thursday, back at work, feeling some benefit from having the Wednesday off, but still, as every morning is proving to be, a difficult and tired start to the day.
For the last week I have been sleeping in the spare bed, it has a memory foam mattress, and space! Which in this beautiful English summer weather, is worth its weight in gold!! Because by ‘eck this little baby is making me warm!! Plus the fact that I am trying my best to sleep on my side, which is very uncomfortable for my shoulders and hips no matter how many hot sweaty pillows I use in all manner of places to prop myself up! So every night without fail, I will wake up several times to sit up and turn onto the other side (rolling is impossible at the moment). This swap of beds has made for better night’s sleep for both of us… but it is weird. We don’t quite feel in the right age range to be having separate bedrooms just yet… so hopefully this won’t be a permanent thing!!
Anyway, back to work… I had a very minimal case load in comparison to my heavily burdened colleagues, which is due to their lovely support, but it does make me feel pretty useless and quite guilty. Although I do understand that if I wasn’t there at all those patients would be added to an ever growing list of patients for my long suffering colleagues to deal with. So I’m not totally useless… By the by, I got through the day. Exhausted, wiped out, fog brained, done in. The drive home was weary, and I was finding it difficult to keep my eyes open.
At home, I vegetated on the settee, despite the most beautiful summer evening (we bought out first set of garden furniture this spring – I was so excited – but I have barely used it as every evening all I want to do is go to bed!! Last year we had had barbeques coming out of our ears, using dog crates and camping chairs as furniture!!). I had a weep and a chat with Andrew about how I was feeling, and at 8.30pm we went outside to watch the dogs in the garden… that cheered me up.

This morning arrived, and I knew I had my 25 week midwife appointment. So after I had eaten my breakfast I wrote down the main things that were making my life hard (picture below). I felt I had to do this, as I knew I’d either forget (fog brain/baby brain… it’s a wonder I know how to spell!), or I’d be too upset to get the words out. For me at the moment, the worst feeling is that I don’t have the mental strength to keep going in to work and focusing. The physical side is hard, but as anyone who has RA or any other chronic pain problem will say, the pain is a given so you just keep going, working through it. But once the mental toughness has slipped, the pain becomes too much to manage.
The mid wife was lovely (I’ve not seen the same one twice yet and some have been better than others!), and very supportive, (yes I did get teary and upset). Everything baby wise is going swimmingly. But she immediately made me an appointment with the GP so I could discuss taking some time off. The GP (a very well dressed, highly made up, hard faced, slim woman) was less supportive and comforting. Very matter of fact and (I felt) suspicious. But after some rather hard questioning she signed me off for 2 weeks, and prescribed me some ibuprofen gel (10%).
I felt emotionally drained. So after letting work know, and again getting a lovely response from my boss who has been nothing but supportive the whole time I’ve been pregnant, I went home and slept!
So let’s see how the next fortnight goes… I worry I’ll have the same dilemma as I did this Monday. Every morning is tough, how will I know if I have enough strength in me mentally as well as physically to go back to work, and how will work feel if I keep popping back for one or two weeks here and there?
I’m not 100% sure about using the gel… especially not if I’m off work. I prefer to manage my pain in other ways if I can. Any thoughts on using Ibuprofen gel during pregnancy?

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A tough start to the week… But it will get better!

Last Wednesday I went home ‘sick’, I stayed off until Monday, I decided for the first time in my life I wouldn’t rush back the next day. I felt much better than last Wednesday, but it’s very difficult to know how ‘well’ you are when every morning is so difficult, and every day so dependent on the activities that it holds.

Work was ok, a good distraction, but generally when I’m distracted, I forget quite how much I’ve done. It was a busy day Monday, and an even busier Tuesday. And it’s only when I sit down at 3/4pm to do my notes for the day that I realise I can’t get back up again, and by 4.30pm my hand is fixed in the pen holding position! Doh… Maybe I’ve done too much again. But I feel so guilty that I already have a light case load, because as a team we are so stretched at the moment with staff shortages, I already feel like I’m not pulling my weight.

Tomorrow is a day off, I have started to use my holidays to take days off in the week to break the work up…. Hopefully this will work… But right now, as I struggle to type, struggle to move on the settee, struggle up the stairs, struggle to hold my tooth brush and struggle to get comfy in bed, I don’t know if one day is enough. Let’s hope so!

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Zeus and Riva this evening with their birthday tea… 3 years old today! Sadly I haven’t made it out on their birthday walk.

Exhausted already…

And I’ve only just pulled up at work… Let’s hope today goes quickly and without any snags!!

Day off sick…

Today is the first day in over 7 years that I have taken the day off sick because of my RA. I don’t like it, but I know it’s the right thing to do.

I’m experiencing such turmoil.
Thoughts of guilt – from leaving the rest of my team to deal with my patients, to the idea that I might take myself to the swimming pool to ease my joints (“people off sick don’t do that, if your too sick to be at work, your too sick to go swimming surely?!”).
Thoughts of disappointment – from not being able to keep going
Thoughts of anger – at myself for pushing myself to this point

But equally, I know it’s the right thing to do, I have to listen to my body more, as I stated in my blog ‘Good Days and Bad Days’ yesterday:

“Essentially, this is me starting to consider my life and health over my sickness from work… A big step for someone who abhors being off work”.

I just didn’t realise that I would have to take that step today!

Good Days and Bad Days…

We all recognise this pattern I’m sure. I have been working at my pacing, and I have eliminated milk from my diet (not quite dairy completely… but not far off), and I am a lot better than I was 4 months ago:

Fat Fingers!

Fat Fingers!

I’m sure the above changes will have made some difference, however, as every medical professional keeps telling me, ‘as it [pregnancy] is a high steroid state for the body, RA tends to get better naturally during pregnancy’, maybe it’s just that as the months pass by, my natural steroid levels are helping me keep my pain at bay.

My last consultation with a medical professional was with my obstetrician. She informed me that despite there being no real risk to baby with taking the prednisolone, if I continue with it for the duration of the pregnancy she will have to have me on IV hydrocortisone during labour and keep me in for observation for 3 days post-partum. This means a consultant led labour in the hospital. I had kinda had my heart set on a labour that was midwife led, and ideally involved a water-birth. So I have decided to give it a go giving up the steroids.

The last time I came off the steroids was at about 8 weeks pregnant (March-April time), I went from being on 10mg daily to nothing, I lasted 5 weeks and I was in hell…. See hand photos above.

Since going back on the steroids, I have reduced them down gradually from 10mg to 7.5mg to 5mg to 2.5mg, but before the obstetrician appointment, I found I was still struggling at 5mg, and therefore didn’t spend many days at 2.5mg. I was in turmoil, I felt that if I was still getting pain and stiffness at 5mg, what was the point of taking them anyway, but the pain stopped me from stopping them all together as I knew I just wouldn’t be able to carry on at work. So I stuck at 5mg, knowing that I had pain, but that it was less than I would if I wasn’t using them at all**.

After seeing the obstetrician, I made the decision to try to wean myself off the steroids, and have accepted (reluctantly) that this may mean I have time off work if needed. I wanted to come off the steroids if I could anyway, as I wasn’t 100% sure they weren’t giving me muscle and tendon pain (or was it just my tendons with synovial linings that were giving me the jip and therefore all part and parcel of the RA… the trials and tribulations of being your own therapist!), which to be honest I could do without, especially with a little baby on the way. Plus I’ve got to stop them eventually, therefore, I feel better now, with it maybe effecting my work, than when I have junior to look after, love and enjoy!

Essentially, this is me starting to consider my life and health over my sickness from work…. A big step for someone who abhors being off work.

So, my regime has started, my week on holiday was my last week of 5mg/day. I then started to alternate 5mg/2.5mg for about 4 days (I have a short time frame if I’m to get off these drugs in time for my obstetrician to be happy!! 28 weeks… I’m currently 24 weeks!), I’m now at 5mg/0mg… the first few days of 0mg weren’t too bad, and some days even the 5mg days were worse (possibly activity related), today has been a 0mg day… I was hoping to go swimming, but I have postponed that until tomorrow – today was tough. I have a big fat swollen knee, and a very painful left ankle and midfoot… but it has been a busy days at work too. Hopefully tomorrow will be better!

The plan is, to break my 5mg days down to 2×2.5mg initially, then go to 2.5mg/0mg, and a few days before week 28 to finally get to 0mg/0mg……

That’s all well and good, but I then have to manage with that until week 36 until I see my obstetrician again to start making birthing plans.

I am so grateful for my other half, he is being so helpful and understanding, and equally isn’t treating me like a patient! I still have to ‘do’ about the house, there’s no being waited on in this house! Which I might moan about at times (in jest), but I am hugely thankful… I don’t want to be sickly, or get into a ‘sick’ role, I just sometimes need support, and that I have in abundance (and the fact that the dishwasher, washing machine and dryer get filled and emptied now makes my life a little bit happier!!).

**I’d love to hear if any of you have any thoughts on the steroids and muscle pains/tendon pains and coming off the steroids after an extended period of time? Part of me keeps wondering if the battles I’m having now are a little of my own making for taking the easy route?

 

Me at 23 1/2 weeks...

Me at 23 1/2 weeks…

We’re all going on a… Summer Holiday :-)

St Buryans, Cornwall

St Buryans, Cornwall

Evening all… Not posted much for a while. I’ve been on HOLIDAY!!! Much needed time for rest and relaxation. YAY!

So I decided to do a blog about my holiday instead of my RA today.

We went to Cornwall, and what a beautiful week we had. We took our time getting down there, staying over in a terrible B&B on the way down (just some chain pub with some very scruffy rooms), to break up the journey, but it did the job.

The next day our trip continued in glorious weather, we stopped off at about 10am at Lifton Farm for some breakfast, it was beautiful! The cherries and strawberries were sooo soft and sweet. There really is nothing like English grown fruit in season! Mmmm!

We then spent the week camping at Tower Park in St Buryan. What a brilliant camp site!! The fact that it was quiet was a big help, but it was so spacious I’m sure even in the height of the holiday season it would have been lovely, plenty of camping space, with trees for shelter and shade, clean and delightfully powerful showers (free too!). A play area, and best of all, doggies welcome! There weren’t any plugs about however, so we weren’t able to charge the phones, but I found it really quite relaxing to not have to worry about the phone. A true relaxing holiday!

The week was filled with gentle walks (although some not so gentle hills and cliffs!), lots of sunshine, reading, sunbathing on beaches with the pooches, a little shopping (for some shorts as none of my ‘bottom half’ clothes fit now!), and lots of cream teas, and Cornish pasties!

Pirates Cove

Pirates Cove

Me and Zeus Sunning ourselves

Me and Zeus Sunning ourselves

Zeus surfing his way in with his stick

Zeus surfing his way in with his stick

Lands End

Lands End

The worst things about the holiday… the fresh sea food… Being pregnant, the ‘advice’ out there is to avoid certain sea food unless it has previously been frozen to avoid listeria. My favourite sea food include: Prawns, Clams, Scallops, Crab, Lobster, Langoustines and so on and so on… and Cornwall have these in abundance, all fresh! Never seen a freezer in their lifetime. I am often dubious about this sort of advice, I’m sure my mother wouldn’t have had this advice regarding food when she had my sisters and I, so I’m sure that the majority of time I would have been absolutely fine enjoying these beautiful fruits of the sea, but equally, is it worth the risk? So… Cornish Pasties it was!! My food was still fine, but it wasn’t what I’d have picked normally… so I guess we’ll just have to go back next year!!

Lands End

Lands End

I particularly enjoyed The Kings Arms in St Just, a lovely little place, and a great pub, it did real ales (mmmmmm….. another thing I couldn’t enjoy!), beautiful looking seafood, and some excellent options of the non-seafood variety, it kept its ‘English Pub’ feel, had a welcoming knowledgeable landlord, and was doggie friendly!!

St Ives

St Ives

And finally on the last day, a boat ride with our salty sea dogs to see the seals setting out from St Ives at midday on the Isla Bea.The first time I’ve ever been on a boat in Cornwall and actually seen seals!! I absolutely loved it!! There’s nothing like being out on the sea!

Zeus patiently waiting to set off out to sea

Zeus patiently waiting to set off out to sea

The Seals!

The Seals!

Salty Sea Dogs!

Salty Sea Dogs!

We followed this with a leisurely drive back up the country, stopping off at the White Lodge in Cheltenham for an over night stay to break up the journey… to be honest, the journey was going pretty well, and we could have been home by about 10pm if we had kept at it, but I think Andrew was keen to get on to some wifi so he could watch Wigan Vs Saints on Sky Go!! We fell on our feet with this B&B, it was beautifully clean and well presented, with stunning gardens for the pooches to stretch their legs, wifi (obviously), and a really tasty breakfast in the morning. We were the only people in that night. I hope it does better trade at other times, as it was a lovely stay and I wouldn’t like to think they were struggling (hopefully not!).

A brilliant break away, with plenty of rest. Getting off the floor every morning was a little tricky, but in general, I was feeling pretty good (regular 5mg steroids did help to make sure I enjoyed myself), and the levels of rest vs activity were just about right.

 

Chilling!!

Chilling!!

Happy Holidays everyone… how long will this feeling last??!