DLA, YAY :)

[Sue8]

Hi everyone, hope you are all smiling even if it is through pain

A month ago I decided to have a go at claiming DLA. I was not holding out much hope and at the very least expected to be called for a medical. To my delight , today I received the awards notice. I am getting low rate care which is fine but no mobility. They say it's because I have a stick for help and don't need help from a person to get around and even though slow I can walk more than 100 metres. So hey ho never mind £20.55 per week is better than a smack in the eye Not that I needed the money but every little helps. The only thing is and I know it's sounds daft but does this now mean I am officially disabled?

Anyway my eldest is up and I told him I get DLA to which he replied "who for?". I said me of course who else. Then my eldest daughter dropped by and I told her and she said the same. I hope now that she sees that I do indeed suffer pain and am unable to do certain things anymore.

At the moment and for the past 4 days I have actually felt quite good. I have painful toes and heels but everywhere else is mostly pain free. I am assuming that the MTX has now kicked in and am on 20mg per week. I will drop another 1mg of pred on Monday and see how I go. But the future is looking brighter.

Hectic day tomorrow as I am hosting my youngest grandsons 1st birthday party with about 25 of us to cater for. Lots of cooking in the morning and rolls to fill etc. Been a long time since I did a party so I am looking forward to having most of my family here.

Hopefully I won't be to washed out on Monday as I have to take one of my GSD to vets to be spayed which I am not looking forward to but needs must now we have a male dog in the house.

Keep smiling you know you want to

[Hidden]

Hi Sue8

I am glad that you have been awarded DLA although at the low rate. I know its not the money but the recognition that you have a debilitating illness that is important. As you are now officially in receipt of DLA you may also be entitled to look for help with, cavity wall insulation, loft insultation and new boiler - oh and also do not forget your £10 Christmas bonus which you will receive automatically.

Gald that your symptoms are better this week - don't do too much at the party or you will knock yourself out for Monday.

Have a good time.

Margaret

[Sue8 in reply to Hidden]

not got cavity walls and loft insulation all been done as my hubby is a builder lol. Can I really get help with a new boiler??? Do you know how I go about this?

Oh I will treasure the £10 bonus lol.

Party been hectic but over now so will rest all evening. My older dog goes to be spayed in the morning so anxious day tomorrow.

[Hidden in reply to Sue8]

I am not sure - I get inundated with phone calls about this - try the government web site directgov.uk re benefits or the firm that did ours was Home Serve not sure if they have a website. I will look further into it for you. when I have more time. Glad the party went well and I hope the doggie will be okay tomorrow.

Margaret

[Hidden]

Sue8

Found a link for you:gov.uk/warm-front-scheme

[Sue8 in reply to Hidden]

you are a star thank you

[Sue8 in reply to Sue8]

not eligable, it does not say DLA on the criteria

[mega]

Well done Sue8. It would never have occurred to me but there must be plenty of hard-up older people who are entitled to claim when suffering from one of these debilitating conditions. Why does no-one point it out to them, I wonder?

Well done with the party, too. I've got my ex-boss and his wife 'dropping in for a sandwich' unexpectedly tomorrow and I find that daunting! Haven't seen them for 7 years but they're lovely so I'm sure it'll be fine.

Hope you continue to feel good.

Best wishes, Maga

[Sue8 in reply to mega]

Thank you x A little stiff this morning but I am sure the pred will sort it lol

[Hidden]

Hi Sue,

A little extra cash always comes in handy, so enjoy. After all, you've worked hard enough to get it. Hope all went well at the vets. I have always hated taking my pets to our local vets. Not that they don't do a good job, but that I get in more of a state than my animal does, and then there's the cost. They're not exactly cheap are they? That benefit will have been spent as you crossed the threshold. Ha!

Pats.

[Sue8 in reply to Hidden]

Hi Pats, yes all went well at the vets though I got upset when I fetched her home as she was wobbling everywhere. She good today and I know I have done the right thing for her. No more seasons and no more phantoms. I had her nails done and teeth while she was under and came to a lovely total of £265. Could have done without it this time of year but spaying has to be done mid seasons.

Anyway how are you feeling? I am washed out today, my 7yr old not long woke me up bless her. She said "mummy you fell asleep again" lol.

I dropped the 1mg of pred yesterday so not sure if that is why I am fatigued or just these illnesses in general. Back at rheumy next Tues, will be asking why my crp has gone back up to 29 which is highest it's been. Maybe he will increase the MTX or put the steroids back up I don't know.

Sue

[Hidden]

Hi Sue, I see from my records that you were on 12mg pred in November so I guess you might have dropped it a bit by now. I guess the lower you drop, the more careful you have to be with pacing yourself. Easier said than done with small children to cope with. And let's not forget the pets! However, the meds seem to be doing a good job. The 1mg drop could have caused tiredness, so do try to ease off over the next few days. I really had to 'watch it' when I got to 10mg and tried a drop months ago. I managed to get down to 6.5mg and had a flare which then led to me having to go back up to 10mg again. I stayed on that dose for 5 weeks. Whilst on the lower doses I caught a virus which led to 8 weeks of illness. This was why I had to increase the doses, I'm sure.

Yesterday I dropped from 10mg to 9.5mg and I cut a 1mg tab in half to do it. Why, because although I have 2.5mg coated tabs, I am taking no chances that coated tabs may not be absorbed as well as uncoated tabs. This is my 2nd day on uncoated tabs and I feel OK. Fingers crossed as usual.

On Sunday my partner and I went to Exeter and I went shopping ON MY OWN! in M&S for 2 whole hours. I desperately needed clothes for winter, but with the help of 2 lovely members of staff I managed it without being in a state of 'collapso!' I felt so thrilled. No panic attack and no being carted off to the cafe for a rest.

By the way, Sue, my eldest daughter is now thought to have RA, not fibro. She has found that taking fish oil capsules as well as Naproxen has virtually knocked the pain out and she feels so much better.

Often I feel a bit guilty that I sleep a lot. It seems to me that my body is saying 'just let me sleep!'

You say that you often nod off. I guess that you are probably not getting the quality sleep you need. It must be hard for you with all of your responsibilities, but try to get tucked up early to make up.

I'm sure your lovely dog will make a good recovery and be much better in health because of the op.

Good luck with the rheumy.

Pats.

[Sue8 in reply to Hidden]

Well done on your shopping trip. I have not been on a shopping trip in months and not sure how I would cope but would love to try lol.

I have RA as well as the PMR, my rheumy thought I may not have PMR when I saw him but his letter of diagnosis said different and my GP also thinks that I do indeed have both as do I. I am on 11mg of pred and 20mg of MTX. I rarely need the naproxen maybe once a week or so. I took some on Sunday as a just in case while I was doing my grandsons party.

My CRP has gone up to 29 on my last test 2 weeks ago and now I am anxious what this weeks figure will be.

I do wake a couple of times through the night mainly due to my arms going numb so I have to turn over. I also get up at 6am with hubby to sort the dogs out with their tea and treat and toilet etc so I suppose it all adds up.

Not doing a lot today, not even cooking dinner as I forgot to lift the meat out of the freezer last night so hubby will have to make do with a fry up and the kids have plenty to choose from. We have got a small real xmas tree for out the front of our house so will do that with the kids and that's about it.

Have a good day

Sue x

[Lawrie]

I feel for you Sue8, you are a trooper!

You have me wondering now since you are from the UK and my relatives are from the UK, (Scotland) if this disease is mostly found perhaps in people from UK descendents? Just thinking outside the box. (Or maybe Europe)

Glad your Grandsons birthday went well and that your dog has recovered.

Sorry to hear that your CRP is at 29. I started out with 78 CRP. I have gotten it down to 14!!

Have a blessed day!

Lawrie

[Sue8 in reply to Lawrie]

oh no my cRP is at the highest it's ever been and that's on pred and MTX. 78 is extremely high. I have had mine down to 14 when on high dose pred. Back at rheumy on Tues so will ask about increasing the pred again.

A trooper? Me? lol, I suppose I have to be with still having young ones to look after 7 & 13yrs plus I home educate them. They are good though my 7yr old understands how I can feel bless her and is brill at helping me out. my 13yr old has special needs and is hard work to communicate with but when I am having a bad day he tells me to go to bed which I don't do cos of the 7yr old but the thought is there.