Hello from Plymouth

psychkez

Hi everyone, My name is Kerry, I am 30 years old, married with two kids aged 10 and 4. I am a uni student studying psychology and criminology and have just finished my second year, i have one more to go.
I have been going through the diagnosis process since just before christmas and have been diagnosed with psoriatic arthritis. It started in my knee, then my hand and now i have it pretty much everywhere.
I am in constant pain but am still yet to see the specialist so have to grin and bear it for the time being. My doc has given me morphine for the pain and i see the specialist in June.
Yesterday i had grab bars, a toilet seat with bars, steps and a bath lift fitted. I will be honest, i havent taken it so well. Today my husband gave up his job so that he could help me out more at home and with the children.
My husband hasnt taken it so well, I think the problem is that he just wants to make me all better and to make it go away which obviously he cant, then in other ways he seems all concerned about how it effects his life more than mine. Maybe i am wrong, but it certainly feels that way sometimes.
My kids have been amazing and are more than happy to help me when i need it. they think its really exciting that i have all these new 'toys' in the house lol.
I think i am still in the shock phase, every day feels like a battle and i cry more than i am happy, im hoping that on here i will find the support i need and just the fact that i will have people who know how i feel and what i am going through is a very comforting thought.
I realise this is probably a much longer post than most put on here and i dont even know if this is the right place to post it but if you reach the end then thank you for reading and i look forward to making many new friends on here xxxx

dreamdaisy

Arthritis doesn't just hit and hurt us, it hits and hurts our families too. My phone has just rung, so I have to go. I will be back.

dreamdaisy

Right, it's a bit later, I have had me natter, a cuppa and a bag of crisps - and a chance ot sort out my thoughts.

Arthritis hits and hurts everyone, and I think it can be tough for the male of the species. For the male that has arthritis, well, he wants it fixed: men like fixing things, they like to know that if they do a, b and c, d will be mended. Arthritis ain't like that. The same applies to supportive spouses: they want to 'fix' us. They cannot. They feel frustrated, angry, annoyed. They watch us struggling and feel helpless. Often they wonder about the impact on themselves, and why not? It has a huge impact on family life.

Everyone's version of this dross is different, no-one can predict the rate of decline, for some it is gentle, for others fast and agressive. The meds do a certain amount but rarely do they do as much as we want them to. The unpredictability of the disease can cause friction too: one day we can manage to do stuff, the next we cannot. I count myself fortunate in that I have never heard the plaint 'Well you did that yesterday, wake your ideas up, if you did it then you can do it now.' I am sure many on here have, though, or heard stuff along similar lines.

We on here understand what all this is like. I am in my fifteenth year of dross, I too have PA (undiagnosed and untreated for five years as I did not start in the classic way, then pinpointed after four years of meds.) I have recently found out that I have OA too - what I thought was PA damamge in my knees isn't, not by a long chalk. Never mind.

I have a raised loo seat but so far that is all. I like it, it's useful, it saves quite a bit of discomfort. I have not walked without crutches now since 2002 - I don't mind anymore, they help, it means I can do more, though the amount of walking I can do is steadily declining. (A walk back from the curry house that would take my husband about five minutes now takes about twenty. We sit for little breathers on peoples walls and at bus stops. I don't want to be like this but I cannot change it.) Acceptance, for both you and your husband, is not easy. There was a very good thread about just this topic on LWA recently, it was started by collywobble. I will go back and find it and bounce it back up for you so you can have a read through. (LWA is the living with arthritis bit of this forum, it's where we deal with the meds, doctors, treatments, side-effects, where we can rant and rail at the world knowing that people will understand.)

Right, I have rambled on enough now. Stick with us, girl, we will do what we can to help. Look through the LWA forum, you will see what it is like, we will answer any questions you may have (if we are able) and relate from our own experiences, both good and bad. Trust me, we know our stuff. I wish you, and your OH, well. I reckon it could well be a bumpy ride for both of you - the stress is enormous on each, and different for each. DD

PS Thread duly bumped up - it's called Acceptance? and was started by collywobble.

psychkez

Thanks DD i have read the acceptance thread and posted on there, you are right, it is a very good thread and has helped a little.

I know i am in the early stages and i am hoping that in time i will learn to live with it but at the moment i find it very hard to see past today. As you can probably tell, i am not in a good place with it at the moment but i really do hope that will change.

Thankyou for your kind words

Kerry x

suzygirl

Hi Kerry and a HUGE welcome from me. I have replied to you on the acceptance thread, but in case you miss it, I shall post here as well.

Firstly, I am fascinated by the fact you want to be a forensic physchologist!! I love reading books where one is involved. ( Mostly cos since arfur, I don't believe in happy ever afters anymore, gritty books more suit my mood! ) I hope you are able to carry on with your studies. You have done so well, to get that far with 2 children.

The adaptations you have had fitted are 'enablers'. They enable you to be independent. I hate having to ask my OH to get me off the loo, and as for the bath forget it. I asked him once, I think the sight will haunt the poor bloke forever! :shock: I have to say, I wish I hadn't been so stubborn about it all, and let them put in the aids at the time. However, I thought I would 'get' better. I thought they were all just making a 'fuss'

It is nearly 5 years for me now, and along the way I have acquired lots of pretty coloured tablets and a variety of interesting illnesses. I have good andf bad days, ups and downs. My life has completely changed, but I have more time and for that I am grateful. You do get through it and find a kind of peace, honestly.

My hubby wouldn't accept it at first, it was a huge shock. He kept telling me, that I didnt need the crutches or the wheelchair. When the gp spoke to us both and told him I needed the wheelchair, it began to sink in. The first time, I went on holiday in a wheelchair, I had a tantrum worthy of any 2 year old. You know what, I had a brilliant time. I think it makes you more determined not to let it get you down.

Even from the sofa, unable to move, I would read to my children, play a game with them or watch a favourite tv movie or program. So, you still find ways to be close to them, it is just in a different way.

Daisy is spot on when she says that men try to fix it. Our relationship is closer than ever, it has made us stronger.

I hope my post helps you, it is a hugely rambling one. I am hoping it will help you to see it can be positive, thats my intention anyway. It is a bumpy ride, but hold on it can still be fun!!!! The ;lovely peeps on here, will help 8)

dreamdaisy

It takes time. I have had years and years of this, and as a result I sometimes lose my focus on it all and forget about the early days (but that is probably because I didn't have them, truth be told.) I hope I didn't plunge you in at the deep end, that was not my intention, I thought it might help. It is a difficult thing: everyone's arthritis is different (despite the umbrella titles), everyone's reaction to it is different, everyone's coping strategies are different, the rate at one learns the strategies is different.

Arthritis, llike life, is complicated. Equally life, like arthritis, is complicated.

suzygirl

Hello, me again!!! I was so tired when I replied to you last night, I feel I didnt quite make a few things clear.

I am 39, now, and happily married with 2 lads 18 and 13. I was originally diagnosed with multiple sclerosis. So when a few months later I was rediagnosed with lupus and aps I was initially relieved, as I felt that at least was treatable. A few years in with flares, infections, complications and a few other labels added. I have a clearer picture of things.

I was trying to say, that if I had initally accepted my diagnosis instead of fighting against it, I may have made life easier for myself. Although maybe my fight wa swhat kept me going.

I was trying to say that when I was first diagnosed, it was a huge shock and a massive lifestyle change, so I understand what you are going through. However, it doesn't stay like that. The meds kick in and get things under control, yes there will be bad days. You llearn to recognise triggers and signs that mean you need to learn to slow down.

The aids or 'enablers' aloow me to conserve my energy to do things that are more important. You won't always need them, but you are grateful that you have them there when you do need them.

I hope this makes what I was trying to say a bit clearer, however knowing my ramblings, it may not !!! :shock:

girlfriary

Hello, welcome and yes OK this is my 1st post but I am from the same area! Not new to chronic pain,limitations and all that "stuff" that goes with any chronic condition. tired and need to be sensible as it has been a busy day! chat again soon hopefully. C