Yes, I have a disease but . . .

dreamdaisy

. . . . I do not see myself as being ill. The other day I was chatting to a stranger in Debenhams' Costa, we had to share a table due to customer numbers and she asked why I was using a rollator. I explained that I had two kinds of arthritis and that it helped me to get out and about. We went through the usual ' my Gran had that and she swore by eye of newt and toe of axelotyl' (sp) nonsense that is duly performed like some quadrille from a Jane Austen novel, then she concluded by complimenting me on my bravery in the face of such illness. Last night a text from a cousin concluded with 'I hope you feel better soon.' I can't and won't because I do not feel ill.

Let's get one or two things straight.

1. I am not brave. I do the best I can with what I have that ain't brave,
that's common sense.

2. I am not ill. Illness and getting better go together like gins and tonic, strawberries and cream, swimming pools and verrucas but the one thing I am never going to do is get better, so to my way of thinking I am not ill. I am occasionally brushed by the feather of illness but for the majority of the time I feel fine. In pain, yes but unwell? No.

3. I am disabled but that does not render me any less of a person than I have ever been. Other people seem to have more of a problem with my disability than me. I am sure that one can be disabled and well but those who are well without disability cannot reconcile the two. That is their problem, not mine.

I am as I am, it's always been that way and will remain that way. I have health issues which are never going to go away but I do not perceive myself as being ill. I am undoubtedly compromised but that is nothing new for me and it doesn't bother me. It doesn't bother The Spouse either, if anything he can be over-solicitous at times which is most irksome but better than the alternative.

To receive a diagnosis of arthritis if one has been used to having a healthy body must be utterly devastating - we know it is but it's something to which I cannot truly relate as I have never had that kind of body; that does make things easier. Lucky old me. DD

dachshund

Hello DD
people who have not had or heard of arthritis have no idea what its like do they to them it's like a cold I know a lady who had it in her little finger.
joan xx

stickywicket

Oh good! A fun thread to get my teeth into

1. I find the misuse of the word 'brave' irritating beyond measure. The press cannot refer to anyone who has a disease, especially if they are a child, without using the 'b' word. Bravery is when someone volunteers for something nasty or dangerous. I didn't volunteer for arthritis. I put up with it because I have no alternative. I am not brave: I am pragmatic.

2. Nope, I'm not ill either though I do remember, in the early, pre-DMARD flares, I could be. Hence my earliest diagnosis of 'rheumatic fever'. Now, like you, it's just pain and fatigue, not illness. Is that because we've lost the concept of 'wellness' 8) However, when people wish us 'better', to be fair, we can also be 'worse' because we are dragged down by the emotional side of things and we can and do recover from that. Frequently

3. Oh yes, one can be disabled and well just as Paralympians are. I agree that to many 'well' people, if one is disabled one must be 'unwell' because it's clear we're not like them. (And they hope, and confidently expect, never to be like us )

4. The over-solicitous spouse! Tell me about it. Most of the time mine is blithely unaware which suits both of us as it means we both retain some independence (except when I was in re-sus, lacking the breath to tell them which meds I was on and he hadn't a clue :shock: ) but just occasionally he will notice a new type of limp or weakness and suddenly it must be fixed. How? He doesn't know :roll:

5. Yup. Like you, I am me (if you get my drift ) and, like you, I HAVE arthritis but I am NOT arthritis. I am very many positive things with a splodge of arthritis on top

stellabean

I have had contact with several health care professionals lately who have had the impression that as I have had a few weeks of medication I am better now. I started on 7.5mg of methotrexate for 3 weeks but had to stop for a month due to a rash and jaw infection requiring antibiotics.Then I started with 7.5 for 4 weeks followed by 10 mg for 4 weeks which brings me up to date. I saw a hospital physio who said I must be feeling so much better when I'd had 3 doses, I said no not yet. Then I have seen 2 different rheumatology nurses since Christmas who have both given me the impression that now I am on methotrexate my pain etc should be improved. I had no idea it was such an instant thing and now I am confused as I haven't had an instant improvement that I am being expected to show. Are they being unrealistic or am I not responding as I should be I have always thought it was the patient who had unrealistic expectations.

stickywicket

Pain relief is certainly not instant with meth. Indeed, its purpose isn't to relieve pain but to slow down the progress of the disease. That will probably lower the pain but not necessarily. I believe you said previously that you also have OA. Meth won't do anything for that so you'll always be left with the OA pain. (I have both too.)

I don't really expect physios to know anything about pharmacology. I guess they pick stuff up but their expertise lies in getting reluctant joints moving and, if you've been referred by rheumatology, they might just assume you only have RA. Rheumatology nurses perhaps ought to know better but they can't read everyone's notes in detail before every appointment, still less remember them.

It can be thoroughly disheartening if people expect us to be better than we are, especially if they are medics of one sort or another. We just have to keep giving them the facts ie no, I'm not feeling less pain but then I also have OA.

I hope the meth does kick in soon but you're still on a low dose. What are your bloods showing?

stellabean

Hi Stickywicket, the CPR has gone down a bit but I still have swelling in joints, and I do have OA I got that first years ago I apparently had it in my spine for years before I had symptoms.
I am seeing rheumy consultant in 2 weeks and after that an orthopaedic consultant to see if he will hopefully take the bone fragments out of my right knee that are merrily floating around and getting in the way.
I know meth will not do anything for the pain but I hope it will slow down the joint damage soon as I haven't got many joints left that aren't giving me pain at the moment. This fine weather makes me want to get out in the garden.
I am slowly increasing my meth as I have had a lot of drug reactions in the past , all I can do is keep taking the tablets.

dreamdaisy

Stella, for me the meds have been about control, no more, no less. They have never reduced pain levels but I am sure they do for many who naturally think they they work the same for everyone else and ergo don't need a forum.

I bumped into a neighbour this morning as I was retrieving a wheelie bin. We live in a short road where all the neighbours know each other but rarely meet. I was complimented on my dressing gown and told I was looking well.

'That's because I am,' I replied.

'Has the arthritis gone then?'

'Nope, it's still here and getting worse.'

Then all the platitudes appeared, as they do (brave, cure, have you tried: GMS*) Why can't people just say 'That must be tough', or even better and more honestly ' 'Cor, I'm glad I'm not you.' 'Rather you than me.' because I reckon that is what they are thinking.

Arthritis is a case of mind over matter: I do mind but that doesn't matter. My humira awaits: unlike the meth I can start the day with a big prick. DD

*GMS = give me strength

stellabean

Dreamdaisy that is so true. Last weekend we were walking our friend's dog with ours as she is in hospital,this involves my hubby taking our mad staffie cross and our friends dog while I take our elderly ridgeback tied to my elbow crutches( Ii can manage him unless we see another dog then it is plant your feet and hold onto his harness) We had just got to the top of a track that I walk most days if a very slowly when we met some visitors all in their designer hiking gear.We exchanged greetings then the woman truned to her husband and said "she doesn't look like she should be allowed to walk up here what if she falls someone will have to rescue her how selfish is that" my reply" My hearing is fine and when I do fall I just get myself up thank you for your concern " and merrily carried on while she turned a very deep shade of red. I used to walk 5 miles a day before my injury I can't get to the fells anymore but the road above the village gives me the chance to feel like I am part of the way there the view is great.

dreamdaisy

I've mightily overdone things in preparation for tomorrow and fired up the OA, it's time to broach the ibuprophen to reduce the swelling in my knees! . I am not ill, I've been stupid. DD

GraceB

DD, I hope the meds have helped, even a little.

I also hold the definite view that "arthritis is part of me - not all of me!".

GraceB

dreamdaisy

Saturday was a blast, I was very tired yesterday and allowed something very stupid to happen.

I was sent a lovely keyring for my birthday and made a complete fist of transferring my keys from the old one to the new: I didn't think and ended up breaking my thumb nail, to the point that it's ripped into the nail bed, right on the outer side of the thumb, the big you inevitably repeatedly hit because it's sore. I have a split in the skin too. Yesterday we returned chairs and champagne flutes to our neighbour and had a coffee. I unthinkingly allowed her labrador bitch to lick my left hand and today the top of my thumb is throbbing . . . . we all know what things dogs like to lick . . . . and when one is immuno-suppressed it's not a good idea, is it? Best Ron Moody voices, everyone:

' I am reviewing . . . the situation . . . . and wondering 'bout the nasties I will find . . . . ' DD

daffy2

I am not ill, I've been stupid. DD

Not stupid DD, unwise - there is a difference.
I hope the unwanted canine gift can be quickly disposed of.


Just realised how that came out - pity a poop bag won't be sufficient eh?

stickywicket

To go back to the title of this thread - yes, you have a disease but....

You have a disease so normal activities such as partying and fitting key rings are fraught with danger :roll: But, coping with your disease has made you strong mentally so you are, virtually, shrugging it off. A fair trade-off, I think. Some might think their lives had virtually ended with a badly damaged nail and thumb.

I'm sure you will, sensibly, continue to review the situation and, as for 'where dogs like to lick', let's be grateful she's a bitch

dreamdaisy

Thank you Sticky, I have worked hard on the thumb today, soaking it in very hot water laced with disinfectant and squeezing the gunk out until it bleeds: done this three times and tonight it is far better. It hurt hugely but regarding new non-arthritis pains as interesting can reduce their effect. I also took the opportunity to work on my alphabet of sweary words: can anyone help with the letter E?

Tonight's alphabet will be an old favourite, three syllable words with consecutive vowels either forwards or backwards, e.g. asterisk, bucolic, cinema. It's a challenging one, especially as I do not allow myself the use of -ing, it makes it too easy. DD

stickywicket

That's sounds horrible but necessary, DD and is, of course, only pain. You can do pain, yes?

As for the sweary alphabet - I once typed one out for future reference :oops: So, naturally, I've lost it :roll: Would e**ing do?