What would you do?

LignumVitae

I'm a bit unsure what to do so I throw it open to your wise and experienced field. I am heading to Cornwall on Saturday morning - lots of sitting in a car and a strange bed for a wek. Tomorrow I have to go to see my nurse for some education on Enbrel. It is group education so not a one on one. I have become incredibly stiff this week - yep, even stiffer than I was - and nothing is shifting it. I feel really sick because of it. So far steroids have done nothing to help me with this flare/ loss of medicine control and I've tried a jab and tablets. So I'm inclined to think they will do nothing now. Is it worth ringing my nurse today and telling her and asking whether it is worth a steroid injection or would I just be wasting the resource of a steroid and putting something in my body that will be ineffective if they have done nothing so far? I absolutely don't know what to do which is very unusual for me. Failing that, does anybody have any bright ideas which might help?

stickywicket

For me, indecision goes hand in hand with long-lasting, unrelenting, high-octane pain. For some reason my brain just goes squidgy and every time I force it into a decision it immediately comes up with several reasons why that would be a bad idea. This is not my usual brain, you understand. It's the substitute one that sneaks in under too much pressure.

You're going on holiday. Lovely, but pressure. You have two small bodies to cater for. Lovely but pressure. And a bloke. Ditto. All that might help to explain why things are now even worse. I honestly don't know whether chucking more steroids at the situation would improve it or not but my reasoning would be that the rheumatology nurse would be the best person to talk it over with. You wouldn't be ringing for steroids but for the chance of an informed opinion.

As for going away, find room for anything that will make your life easier. Don't put everyone else's needs first. If you're in better physical shape, everyone will have a better time. My memory foam pillow goes everywhere with me. For others it's a mattress topper. Plus anything that will make sitting in the car for long periods easier. (I find lots of water > loo breaks helps )

And, enjoy it

LignumVitae

Thank you SW - you definitely solved one indecision - I will take my memory foam pillow with me.
I did mention to Mr LV that I was struggling with the whole concept of all that needs doing before we go. He helpfully said I didn't need to sort his clothes out, he would do that :roll: I don't think I have ever packed for him so why he thought being less that totally helpless now would be a way of reducing my workload I don't know!
My brain has definitely been reduced to a pile of mushy rubble, I forgive it that.

dreamdaisy

If steroids haven't helped before then the chances are they won't help now to survive the coming ordeal of a 'pleasurable' break away; mind you, I doubt it's going to be too much in the way of a fun and relaxing time for you. I dread going away for just these reasons but Mr DD won't go on his own. :roll:

In an ideal world I would despatch him and them while you stay at home for some quality rest and 'me' time. But we don't live in an ideal world. DD

barbara12

Hello LV I would certainly ask your Rheumy about the steroids..I find that sometime they work for a day or weeks sometime nothing..but yours are different mine are in the joints themselves..and yes plenty of breaks on the way,I take a duvet just in case the bed is not up to scratch..no use saying try to keep the stress levels down with the little ones...what you forget to pack, you can buy there apart from your meds that is..so make a list of priorities..and enjoy the break.xx

stickywicket

I am a SOC (Sad Old Codger). We go to our son in Scotland for several long weekends per year and to our son in L.A. for one, long break. So, being of unsound mind, I keep 'Travel Lists in my computer. It saves over-taxing the squidgy brain cells every time. Everything is on the list including the Stuff Most Likely to be Forgotten – my pillow, tablet charger, passports :oops: etc. My biggest headache is always the meds which I count out several times.

I suggest you take some time out to make lists for yourself and the twins and 'other essentials', divide them into what you can / can't trust him to get right then present your bloke with his half of the packing lists. I know he was brought up to date a week or so ago with your current problems and I know he understood it then. Short Memory Syndrome. All blokes suffer from it :roll:

LignumVitae

Thank you all, that is really helpful. I've decided I will have a chat with my nurse tomorrow but I'm thinking along your lines DD - it isn't as I've had a benefit from the steroid so far and the side effects on my skin and nails of having steroids is evident.

I will prioritise my meds and get them collated tonight, that is a good idea (otherwise given my brain I will forget something). Along with taking my pillow I will steal a duvet off one of the spare beds where we are staying and pop it under me. I wouldn't have thought to do (and haven't done in the past) that but it will help. We are staying in a house with my folks, my Mum can be a pain but they are the best of grandparents and I'm hopeful that with three extra pairs of hands it will ease the burden that the girls can be (I think four adults to two toddling twins is perhaps an appropriate ratio for all the time). I have impressed on Mr LV several times that he will not be going for his usual epic long surf sessions at vital times of the day and I am a little bit pleased to hear there is a flat calm sea there at the moment. Whether my less than subtle comments will have fallen on deaf ears is yet to be seen.

Sticky, I will make a list for the first time ever, if nothing else I can cross things off and feel like I have achieved. I probably won't show it Mr LV as he will feel the need to scrutinise it and make helpful suggestions which will of course, not be very helpful. You are not a SOC, my brother on the other hand is - he makes colour coded spreadsheets before his holidays and not just of the things he needs to take but also of how he will spend each day . Spontaneous or what? He is the order to my chaos, the tidy to my mess, the plan to my chancing it - nature or nurture we are chalk and cheese in many ways!

Boomer13

Hello LV; I can't help with soggy brain syndrome. It's terrible to overcome. What I would recommend, if you can, is scheduled daytime absolute rests with sleep, if possible. I know this is difficult with kids, OH and Mum but I think these are absolutely essential for not aggravating things further. My worst travel pain is in my neck most of the time and I recently bought one of those travel neck support pillows for extended time sitting upright. It helped at the destination end of things with stiffness and headaches.

I have no suggestions for over-zealous-Mum stress. My own just can't cope with my not-so-invisible, invisible illness. She's just can't tolerate having a daughter not functioning at the peak of efficiency. I try to laugh, but she can be really intense :shock: Just be sure to protect yourself and not get into situations where you overdo things.

Sorry, not much to offer.
Anna

Slosh

I can't add anything to all the advice you have already been given, especially on the meds front. I do think it would be great though to timetable in a good daytime rest, make thecmost of having your Mum there to look after the girls, hope the weather stays good as then hopefully the girls can go out to the park etc and give you a couple of hours of peace.
After all it is your holiday too!

ichabod6

Hello Lv,

Take this positive thought with you - me and my girls are going to enjoy this week - and let the three other adults ensure you do. Put yourself at the top of the list, the head of the queue and first in anything/event that involves you and the twins. Give 'em a kiss from their honory uncle, take care and enjoy yourself.

dreamdaisy

Soggy brain is a very common occurrence in our lives and it strikes me that what we married arthritic women need is a non-arthritic wife in addition to the non-arthritic male spouse. :roll:

Our holiday sponge bag is already packed with the stuff we need; this eliminates the need to pack it from scratch every time we go away, the only thing I have to add is the charger for the toothbrush.

I have a pre-packed hospital bag, nightwear, underwear, emergency toothbrush, small toothpaste, wet wipes etc. so should the unthinkable happen Mr DD can swoop in and collect.

Lists are a good idea, especially when you have so many people's needs to think about. Start typing, LV! DD

Boomer13

So that's the solution, then, I need a wife

stickywicket

I first decided I needed a wife about 35 years ago.

I was still in my 'credulous years' of RA and trying everything I could. This time I tried a diet that was so restrictive, basically all you could eat were whole grains, fresh veg and fish – no dairy, no fruit, no meat, no pre-packed food, nothing with sugar, additives or 'numbers' in. There was no way Mr SW and our boys would submit themselves to such a regimen so I attempted, while at my arthritic worst, to cook one meal for them and another for me.

I lasted 2-3 weeks, my arthritis getting progressively worse (along with my temper), probably because the diet would only work nutritionally if you had lots of time and energy to plan, prepare and cook. I didn't. When I felt hungry, but utterly spent and unable to stand a minute longer, I'd think I couldn't face yet another tuna sandwich so I didn't bother.That's when I decided that the diet might well help if only, like the author, I had a wife to shop for fresh ingredients, prepare them and cook them for me. Mr SW didn't fancy the op

Slosh

Makes me think of my sister and her husband. He decided a couple of years ago to do the "in" diet of the time. My sister didn't want to do it with him so did cook two seperate meals everyday! Luckily he only lasted about 3 -4 weeks on the diet.