Time flies when your a mum!

Hi there!! Just a quick update…

So, firstly… My how times flies!! I don’t know how mums do anything other than cuddle, feed and socialise with their yummy babies!! 🙂

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Update on my post partum flare… I got back to my clean eating and have stuck to it since getting back from hospital!! It has most definitely helped, the aches and pains have eased, but I am still managing a certain amount of pain.

It’s so difficult to be able to balance all the variables… Last weekend I did lots of dog walks with Seb and Andrew… And my knees blew up like balloons. Epsom salt baths sorted those in 2-3 days.
Over this week aches and stiffness have crept up on me in the neck and shoulders – from lots of lifting an ever increasingly heavy chunky monkey (Seb.. Not Andrew!!), and broken/disturbed sleep.
And this weekend I did some silly stretching of my right wrist to try to avoid it stiffening up at a Christmas party… But instead, just flared up my Oarsman’s Wrist!!! This I have managed with mag oil, avoiding aggravating it, and today my friend did some acupuncture… So fingers crossed… Although not, as that hurts!!

My new addition to my natural management of my RA is magnesium… In the Epsom salt baths and mag oil (homemade!)… I’ve only started this week, and there is SOOOOO much to learn about minerals and their balancing! I haven’t done any testing yet to see what my levels are, but since a huge proportion of the population is deficient in magnesium, it’s my first port if call!!

Next on my list to add are: fish oils, essential oils, kefir/kombucha, fermented veg… (Bought my mum a book on fermenting and going to set her the task of keeping me stocked up!!! I just don’t have the time or the wrist strength for all that veg prep yet…!!).

There’s lots to consider adding to my routine, it’s quite overwhelming… But I remember how overwhelmed I was before changing my diet… So as long as I take things one at a time, surely I’ll get there… I could just do with a good straight 10 hours of sleep…..!!!! Ha!! Never again I suspect!! (But I don’t mind, because my little boy is perfect!)

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Embracing Research

One of my aims when starting out on this blog was to provide information regarding research into Rheumatoid Arthritis, and other related topics, and to encourage more participation in research. Plus help broaden my own and others knowledge on the subject of Rheumatoid Arthritis.

My rheumatologist is based in Leeds, at Chapel Allerton Hospital. They do a huge amount of research, and my initial experience of Enbral (Etanercept) was through a research study they were conducting at the time (EMPIRE study). The research arm of the hospital is the Leeds Musculoskeletal Biomedical Research Unit (LMBRU), and they have Patient and Public Involvement (PPI) groups meetings every two months or so. Go and have a look at their page, and check out their Useful Links for Patients.

Their next ‘Ask The Researcher’ PPI meeting will be held on Tuesday 12th November at 1 pm on Polymyalgia Rheumatica and Giant Cell Arteritis  presented by Dr Sarah Mackie and ‘ An Update on Scleroderma’ presented by Dr Francesco Del Galdo.

I personally don’t live particularly near Leeds (about a 2 hour drive!), and whilst I’ve been at work I have been unable to attend any of the meetings, but this is something I hope to change now I have a little more time on my hands… unfortunately it’ll be unlikely that I’ll be able to attend the above meeting as my due date is the 8th November!! I know many of you will also not be physically able to get to Leeds, UK, for these types of meetings however, my aim is to bring attention to this sort of thing happening, and that it may be going on at your hospitals too, so keep an eye out!!

And in the meantime, I will do my best to bring you any useful snippets from any meetings/groups etc. I get to attend!!

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.

Food! Glorious Food!….. Sorry I couldn’t help it! :-)

So… food.
I haven’t posted for a while as initially I was in charge of the household whilst Andrew went off on a stag do. So I was busy busy keeping the pooches fed and walked!! So my pacing had to eliminate the bike rides and take on the morning and evening walks. But that’s pacing!
However, following that weekend I was unable to conjure up the energy to post as I was struck down by diarrhea and vomiting….. Nice, I know. But interestingly, over the few days I had off work recovering, my RA was a lot easier (not better, but easier). So what was the cause? Coincidence? Lack of work? Or change in food intake?
Now I have looked into food and RA before, but I have been reluctant to massively change my diet for a few reasons. 1) I eat well and healthily, but I do enjoy my food, and the odd treat. 2) I personally feel that once you start with ‘intolerance to this’ and ‘intolerance to that’ you open up more problems (perhaps I’m wrong!), but I have always believed that a little of everything healthily balanced is what maintains and prevents intolerances/allergies. And perhaps I’m way off (or not, but looking at this point from the wrong angle) and it is just my one opinion from observation, but 3) people I’ve met with intolerances/IBS/ulcers often have chronic pain illnesses** and often suffer with low mood. Big sweeping statement I know, and I will be happy to retract it at any time, but currently, from my experience those patterns have come up time and time again ***.
Now, as I say I am happy to retract my third point, well, both my points regarding intolerances (obviously not the one about me loving food… as I do!! A Lot!!), and I am looking into the whole thing with a little more purpose now. Because having not eaten for 2 days during my illness, I was soooo much better (not a totally scientific start – as it could have easily been the extra days off work, I know work adds to my pain as Saturday is generally my worst day of the week)!! Unfortunately, going on a volitional fast and slowly re-introducing foods gradually keeping the worst offenders off the list for the time being….. Not exactly what I want to be doing whilst busy growing a baby!
It’s a really difficult decision to make, especially since I don’t really think that anyone in the world knows the answer, is it better to provide the unborn developing foetus with vitamins and minerals from a wide variety of foods from all food groups, but risk the fact that some of these foods may be making my rheumatoid pains worse, or do I eliminate vast food groups, possibly depriving my baby from certain vitamins/minerals (I just don’t know) during some of the most important months of its newly formed life… but at the possibility of helping rid myself of some sever and debilitating pain… (Which may help the foetus in different ways, e.g. less pained/stressed mum to be) I don’t think anyone knows the answer, I don’t really think anyone knows really what our recommended daily/weekly/yearly allowances actually are? Especially at such vastly different times of our lives such as during pregnancy and during disease?
Plus… Food makes me happy!! Especially all the foods that I consistently see as bad for RA… Dairy, meat products, sugar and gluten – although I think I could manage without gluten without too much heart ache, and I’d like to live without sugar… but dairy…. Meat… especially the badly thought of red meat… oh steak, how could I live a life without another steak? Or cheese? Oh it makes me sad just thinking about it! I could go on about how food makes me happy all night long, but I could also go on about how sad RA makes me (even had a little cry last night)…
If the food issue is indeed adding to my pain (which I won’t know until I cut it out) then I’d have to make a decision, a very difficult decision… what do I want more, and I guess I would have to choose health (but can you believe how uncommitted that sounds!! That is how much I love my food!).
I feel a little bit like I am in the ‘evening stages’ of a bad relationship, coming to terms with the idea of separation, but not yet able to cut all the ties… but in some way I can see it coming. I’m just not sure when yet…
So, any thoughts from any of you out there regarding diet and pain? I’d love to hear of the changes you’ve seen, and what has helped? I know lots of people will have taken these steps, and had different results, please tell me about your experiences! It might help me make my decision…

 

 

 

**(I know, I know… RA is a chronic pain problem! But I have never viewed it in the same bracket as ‘Chronic Pain’, patients with RA don’t have the same pain behaviours as ‘Chronic Pain’ patients – maybe it’s because with RA the patient has a diagnosis, and therefore, can accept the pain and cope/manage better than someone who is continually looking for a diagnosis and no practitioner or consultant can give them a name for their diagnosis apart from ‘Chronic Pain’.)
***Perhaps my snap shot of the population is skewed as those that are out there managing and living with their intolerances/IBS/chronic pain, are the people that I don’t see!! And it is the people that need help with their management that are suffering with depression, understandably in many cases when you hear their stories.

Lesson Learnt…. well, maybe!

So… Effects of the pacing from my active Wednesday night?? My shoulders are killing me!! So was it the rowing? the mowing? the hanging out the washing?

The answer…? Who knows… because I did them all on one night, I’ll never know… I did not pace myself well!!! Ah well, lesson learnt for now 🙂

Tonight was the ‘mother in laws’ birthday, so we went out for Chinese!! So no huge amount of exercise, back on it tomorrow!