Everything an effort

dreamdaisy

The fatigue is so draining, isn't it? Pile it on top of everything else and it's all too much. I hope, despite the extra effort required, enjoying having your grandchildren around is acting as a mini-tonic and well done to them for showing some understanding. You are teaching them a valuable life-lesson, sad but true.

Re the iron tablets, increase your fluids and munch some figs, nature's best drain-unblocker. DD

daffy2

You're quite right about tea and non-heme iron Sticky, I was just thinking that where there may be a problem with low iron it wouldn't hurt to maximise absorption from the diet. I have read that adding lemon juice to tea will offset the problem, but that's of limited use to tea-drinkers who have milk in their cuppa. I seem to remember that some cultures consider rancid dairy products in their tea desirable but for most of us milk that's gone sour doesn't go in tea!

stickywicket

One day at a time, eh? Yes, children, when primed, can be wonderfully uplifting. When staying with either son I try to get out of chairs when no grandsons are present as both insist on helping and it's so much harder

Even the most kind-hearted youngsters are draining though. I hope the cycle ride tires them out. (Did I really type that :roll: )

daffy - Yuk! Definitely not

stickywicket

How's it going, Tezz?

theresak

Not great, SW, thanks. The boys went home last night - Simon came for them, so no bear-hugs this morning.

We have a lovely, crystal-clear stream about 35 mins away from us, in Weardale, and the highlight for the boys of any stay with us is to build a dam/causeway/stepping stones across it, as their father & uncle did before them. It was nice & sunny, so all I had to do was sit in the folding chair & watch them work, which they did, tirelessly.Nick was supervising closely, and the most I had to do all morning was explain why little whirlpools were forming, & why the water flowed more quickly through a narrow gap.

Apart from that, I umpired a skimming stones competition to see who got the most bounces, so a lazy morning.

Unfortunately, I woke up in the small hours with really horrible pain down the line of my shingles scar, which does happen periodically, but not as bad as this. The outside of my left leg below the knee, which has been numb since the shingles 18 months ago, feels like someone is stabbing it with very sharp needles. I can only think that maybe the damaged nerve is coming back to life. I have no idea if this is what happens.

Painkillers don`t seem to touch it - I suppose because it`s nerve pain.

I can only hope for better things, but right now they seem a long way off. I shall try to Keep Calm and Carry On.

stickywicket

I'm pleased to admit I know nothing of nerve pain nor of ex-shingles pain.

I'm wondering if the folding chair was the guilty party. They can have metal, wooden or even tight, hard fabric bars in all the wrong places.

Remember it's the Bank Holiday weekend, Tezz. If necessary please ensure you see someone who does know what they're talking about tomorrow.

dreamdaisy

I'm not an expert on nerve pain or shingles either, so don't know if this suggestion will be of any help or use, but when has that ever stopped me?

After my first open synovectomy I was left with a scar around ten inches long over my knee, my physio told me that the nerves would be regrowing around the site of the scar and would do for some time. Her advice was that when I felt the tingling I should lightly drum my fingers along the length of the scar, concentrating on where the tingling was sited, because this would stimulate the growing nerves and spur them on. I did what she suggested and it helped to reduce the sensation and I now have full feeling along both sides of the scar. DD

hileena111

Hi
I was told something very similar when I had my THR's ....once I was putting bio oil {or whatever} on to do it with a drumming motion not a stroking motion....there must be something in it
Love
Hileena

theresak

DD & Hileena, thanks for the suggestions - I was told something similar after my Achilles ops, but the PHN feels entirely different. However, thankfully, it has abated.


RA being the beast it is, I woke up yesterday with hands the size & shape of boxing gloves. OH has been on household duties since. I thought of ringing my rheumy nurse tomorrow, if no improvement, but not sure if there`s any point, as we are still waiting to find out if humira has stopped working, so a steroid jab would affect the next blood test.

Still struggling,

Disgruntled of Durham.

stickywicket

You have ample reason to be Disgruntled of Durham. When the hands don't work it's so difficult even to do something to take ones mind off things. Holding a book or even a kindle is so awkward and painful.

How are they deciding about the effectiveness – or not – of the humira? If by bloods, maybe you could ask for another blood test and then get a jab? Clearly summat's amiss. It doesn't take a medical degree to work that out.

theresak

They will decide via a mixture of bloods and DAS, plus how I actually feel. They are nothing if not thorough. The thing is, I virtually pleaded for a `stay of execution` with regards to the humira - my way of thinking was that even with it working less well I was still better than I had been on anything else.

It was agreed I could wait until November, as long as I had two extra blood tests, and if the CRP continued to climb, or joints became troublesome, I could phone and I would be seen earlier. I know that if I phone, she will have me in, stop the humira, and set the wheels in motion for either Enbrel or Rituximab.

I know I should phone, but was hoping to hang on until the next blood test, in the hopes the CRP would magically have dropped. Yes, I do see that pig flying overhead!

I`m really narked today, as I love doing General Knowledge crosswords, but frustratingly, can`t hold the pen. I also know I should be sensible - but feeling in a bit of turmoil about the whole shebang, if truth were told.

Silly me.

dreamdaisy

Silly you? Nah, that is so not the case. You are going through a very rough time both physically and thus emotionally, you are dealing with an horrid disease, its various effects on your body, and it is a very draining time.


As I've said before I prefer my OA because that is far more honest in what it does and how it does it. The autos are coy, devious, foul, ghastly, horrendous, sly, a law unto themselves. They challenge not only us but those around us, they require us to hurry up and wait all at the same time. I reckon that many of us have been in similar situations, I know I have and all we can do is ride out the storm as best we can.

Things will get better at some point because they always do. I wish I could tell you how and when but none of us know. You will get through this rough patch because that is what you do and we'll be here, pulling and shoving you along as best we, because that is what we do. DD

theresak

DD, that is such a kind post - I feel so completely at odds with the world and myself at present, & so fed up of pain, pain, pain, but found your post so encouraging and wise.

I will ride out the storm, because you're right : that's what we do.

Thank you.

stickywicket

I do get where you're coming from. I, too, am guilty of staying on meds for too long because I thought, and hoped, and wished. What's more, I can't promise I won't do it again on the 'better the devil you know' principle.

I hope something can make a change for the better soon.

Meanwhile, as for pens etc, lots of wadding round the handle might help temporarily.

As for feeling at odds with the world - do remember that none of this is your fault. I think it's good, in the better times, to take responsibility and see how we can improve things for ourselves. That's a far cry from saying we are responsible for the bad times. They come unbidden and unheralded and we just have to ride them out. We have not caused them and are not to blame for them. Sometimes I find I only realise quite how bad thngs were once they have eased up a bit. Then I wonder how I coped.

There will be a good ending to this and you will be able to stick it out. I just hope it's not too far off.

Patcher

Sorry to hear you have been having really painful time. I too had to come off Humira after 7 years as it stopped being effective and it was a really worrying time as the Humira had been working well for me. The good news is I am now on Tocilizumab and it has proved even more effective. Inflammatory factor now in normal range!!!!!! Sadly it doesn't help OA but never mind. Hopefully if you need to change you will also find it works out better than expected and gets pain and inflammation back in control.
Good luck

theresak

Thank you so much for your messages, SW and Patcher. Hopefully I'll get some Tramadol-induced sleep tonight, and tomorrow is another day.



PS I've never had an Indian head massage, but it's surely more gentle than my OH, who leaves my scalp in a state of shock after washing my hair. Clearly, he is using his 'kneading the bread dough' technique. Good job I love him!

stickywicket

Well, we've now had three more days. How's it going?

theresak

Better than it was, thank you, SW. The swelling on my wrists has gone down a lot, and my fingers are now roughly chipolata size, rather than Cumberland sausage size, so that is good.


My worries over what comes next have to be put aside, and I must try to take each day as it comes - I feel very virtuous saying that, as my late, much-loved mother used to trot that out almost like a mantra. She was wise, and I know it`s good advice.


I do appreciate the support I`ve had on the forum, it really has kept me going.

Tezz x


PS I have put a little `ditty` on chit-chat on this topic.

dreamdaisy

Hello again, I totally forgot to post a 'thank you' to you for your kind words; I have had a busy week what with one thing and another so haven't been looking in for any length of time. :oops:

I am pleased to read that the butcher's counter is out of Cumberland bangers, may it soon run out of chipolatas too. It is very hard not to worry about what is coming next - our lives can feel like this at times, can't they? :island-shark: I know mine has, sometimes it seems that the only certainty is uncertainty. :roll:

I hope you have a better weekend. DD

stickywicket

Sorry I've not been back, Tezz. Busy week.

Well, I'm glad about the Cumberland sausages because, in my younger days, they always came wound round in one long ring :shock: How're the chipolatas?

I think, scarily, we all turn into our mothers. And, as I write that, a part of me is saying “It's a tale” thus proving my point :?

theresak

Thank you, Sticky - my fingers are beginning to look more like fingers now, thankfully, and I`m not in as much pain, so lots for which to be thankful. It`s too much to expect a smooth ride with this RA, isn`t it? However, I`ve had a `wobble,` so onwards and upwards.

We are off to the peace, beauty and tranquillity of Lochcarron on Saturday - we love it there, and I shall be happy just to sit loch-gazing, and potter gently on the shore. We haven`t been to Scotland since the Easter visit when I had the dreaded shingles, so really looking forward to going. I just need a Good Fairy to do the packing - hubby can`t see a problem with packing, but left to him his hiking gear would be in and other essential items would not!

stickywicket

Ah yes! We once had to pack for a month's stay with our son in LA. I was just out of hospital and barely able to walk. I sat in state on the commode they'd loaned me and gave instructions as to what needed to be placed on the bed for packing.

Have a lovely time. Natural beauty is so restful and ever-changing. It would be hard to be bored in such a place. Even pain is lessened - to some extent.

theresak

Thanks, SW - can't beat Nature's canvas.


Another County Championship for Yorkshire - it's getting to be a habit!! Our grandsons are delighted, as no doubt you are.

villier

Just been catching up on your post Tezz since I've been back sorry to hear you have been having a rough time of it although it looks as though you are feeling a bit better thank goodness, enjoy your break you deserve it :cheers: xx

theresak

Thanks Villier - looking forward to our week away in sunny (hopefully ) Lochcarron.