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Date: 10.05.2012
From: Yasmin

Subject: Hi:)

Hi everyone, my name is Yasmin...One of my sisters was diagnosed with rhumatoid Arthritis about a year ago which devastated our family...recently my father has also been diagnosed with it too...I am trying to find out how people suffering from this debilitating illness deal with the day to day situations without giving up on life...My sister has gone through the worst and is now on a cocktail of meds that have helped calm the pains and inflamation down and is getting on with her job and her family life...My father on the other hand is finding things very difficult and has already given up on the day to day activities and responsibilities and has become voluntarily bedridden...I am trying to make him realise how important it is for him to keep active and mobile but its like hitting my head on a brick wall...I am hoping even though I'm not a sufferer myself I can learn any coping methods or stretagies from everyone on here and learn to understand how Rhumatoid effect my father on all levels...I'm looking forwards to making some great friends:)....
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Date: 10.05.2012
From: Colin W

Subject: Re: Hi:)

Hi Yasmin

it can be scary first with Rheumatoidis Arthritis , I started it in 1996 , had to give up work , it takes time for them to get the condition under control

not everyone has the joint damage & most when it under control does the same as everyone one else

the drugs can be scary at first & may take time to find the right combination that work for you , but there is so many good drugs coming out

one thing you could get them both to do is hydrotherapy , realy good for RA , dont worry about the drugs , the immunosuppressants been around a long time & can work very well
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Date: 11.05.2012
From: Yasmin

Subject: Re: Hi:)

Thank you so much for your kind reply Colin, Hydrotherapy, is that something that would be easy to get access through your G.P?...My sister has been a sufferer since last year but as my father is still a newbie do you think he may be able to get referred?...Well, I suppose there's no harm in asking...my fathers got an appt this Monday coming I will ask the specialist about it and see what his reaction is...Thank you so much for your advice...I will let yo know how we get on if thats ok:)?...I will also let my sister know...take care
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Date: 11.05.2012
From: marlene

Subject: Re: Hi:)

Hi Yasmin, welcome to the forum, you will make lots of new friends here. Can ask how old is your Dad?
Your Dad may just be grieving for his old self, bless him. I think sometimes it is hard for them. My Dad had to retire at 55yrs through ill health an he told me no one understands what it is like to be thrown on a scrap heap.
Slowly he became his old self, he took up hobbies and spent many an hour pottering in his greenhouse.
He also realised this was a great time for himself as he had worked so hard to provide for his family.
Don't give up Yasmin, slowly encourage your Dad!!!
Your sister sounds like a strong Lady as you are I am sure.
Sending big hugs to you Take Care Good Luck with Dad xx
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Date: 11.05.2012
From: Colin W

Subject: Re: Hi:)

Hi Yasmin

on other thread you said your Dad has been put on Methotrexate 25mg + Folic Acid , it will take some time to work ,maybe up to 3 months but can be very effective , folic acid helps with the side effects from it , how much is he on a week ,
you can tell how well MTX is working from his blood test , CRP & ESR tells how well the RA is controled

a lot of us are on more than one immunosuppressant , there is some realy good new Bio drugs in last 10 years , they are very expensive but in UK you have to try immunosuppressant first before they let you have them , here is a good booklet on them which you can download

like Marlene said , be supportive & tell him the outlook is good & they will get this undercontrol & hope he feels better soon

http://www.nras.org.uk/help_for_you/publications/publication_detail.aspx?id=a0B80000008XzmxEAC
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Date: 11.05.2012
From: Paula-R

Subject: Re: Hi:)

Hello Yasmin

What a lovely daughter you are wanting to help your dad so much, he is so lucky to have you.

Being diagnosed with a progressive incurable illness can come as a shock to anyone. For me it's the not knowing of how things will progress. There is no set pattern to this illness, everyone is different, there is no one pill fits all drug to take. Some people are lucky and the first drug they try works, others it's trial and error finding which drugs will work. It really is a wait and see game.

There is many different drugs to try and different combinations of what to take with what. Has he had a steroid injection? If not ask about him having one, this should help with the pain short term.

Like Marlene said just be there for him with lots of love and understanding while he comes to terms with it all.

You, or you could ask your dad to phone the NRAS helpline for a chat, they will even, if you ask get a volunteer (someone who's got RA) to ring you or your dad for a one to one chat. Helpline Number 0800 298 7650.

Hope this helps.

Love to you both
Paula-R
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Date: 11.05.2012
From: little gill

Subject: Re: Hi:)

Hi,yasmin and welcome to the forum!!.sorry to here you guys are going threw the mill.your dad will come round eventually! Its going to take time for him to come too tearms with it all!! Think its worse for a man to exept that hes no longer the provider !!if you know what i mean!!.it took me months to exept it((sulked !! And bit everybodys head off for a while..still rather raw!! Maybee you dad could come on here and talk too othes in same predicament..it helped me to talk to faceless strangers!! And tell them what you cant tell family!!..as for your sister shes doing the right thing in trying to keep as mobile and active while shes still able!! One day at a time..thats what i say!! Take care . Xx
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Date: 13.05.2012
From: Yasmin

Subject: Re: Hi:)

HI guys:)...really sorry can't answer all your post individually, time seems to be escaping me today...I hope you don't mind me answering all of you in this one open post...

Marlene, Colin, Paula, Gill...:

Thank you so much for the welcome...You know, even though I'm new on here I feel like I've known you all for years...I am trully touched:)...My dads 73 years old and has never really been seriously ill...to tell you the truth he hasn't been much of a provider, but has lived his life dictating to others and made my mums life pretty much hell running after him all her life...so feeling as if his lost his place as a family provider doesn't really come into it;)p...its more feeling sorry for himself...whereas my mum has been suffering from depression, diabetes, high blood-pressure, has a broken right ankle that has given her years of health probs is the one whose carried him through and has given us children the best possible upbringing she could...but as a daughter I still love my father and try and steer him to making his and my mums remaining life better, as independant as possible and more peaceful...this really has been a battle over the years as he is so stuck in his ways...He sees this illness as a way out of most of his responsibilities placing everything on my mums shoulders who is herself battling so many illnessnes...He is constantley complaining of his pain and now his stomach has been giving him problems since the Methotrexate dose has been increased...going to see the specialist tomorow and mention the Hydrotherapy and see what they say...He has previously had steroid injections in his shoulder but has never found them to help...As far as talking to anyone is concerned his English is limited so I'm the only person who tries to bring some sort clarity and support to the situations...I am a carer to both my in-laws and both my parents and my son who is 11 has Asperger Syndrome and ADHD...so as you see my plate is overly full, with hospital visits, surgery visits and nursing them through various illnesses, the last 3 years have been very traumatic and hard to deal with. The hardest thing is that I'm fighting each one seprately to make them realise that they all need to do what they can to help me, help them...I am only ONE person juggling so many different needs...My own health has suffered so much over the years, but I have to keep going as they all rely on me...

Colin: bio drugs sound good I will check the site out but as you say at this moment it is best to go with the orthodox meds until thing are more under control...Thank you all for all your warm words and advice:)...Have a good evening all...

Speak to you all soon...xox
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Date: 13.05.2012
From: Em

Subject: Re: Hi:)

Hi Yasmin, I too am pretty new to posting stuff on here, but as a sufferer of RA myself I find everyone's comments and reply's so helpful and understanding. It is such a tiring, painful disease and to 'chat' to people in the same position really helps.
I too hope your sister and father get 'sorted' with suitable medication and find some relief.
Well done you, for being a good support to them. x
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Date: 13.05.2012
From: marlene

Subject: Re: Hi:)

Hi Yasmin, I am sending you the warmest hug ever. I hope you get some resolve soon. Have you ever thought social services may be able to lighten your Load. They do have an adult section, try and have a talk with them,they may be able to give you some kind of support with your parents.
Take Care Yasmin and make sure you get plenty of rest and do try to take time out for yourself. XX
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Date: 16.05.2012
From: Yasmin

Subject: Re: Hi:)

Hi Marlene,

Yes I've talked to Social Service on a couple of occasions not contacting them myself but they were involved through my brother-in-law whose 50 years old and has learning difficulties...and than through my father-in-law who suffers from diabetes and has had an ulcer on one of his heels the last 3 years, than my mother-in-law who recentely had a knee replacement op, in the last 3 years shes had Pneumonia, 2 engeogrammes various oher illness and now a knee replacement...shes specifically needed alot of looking after...the social workers were all very empathatic to my situation but couldn't really do anything to help me other than send someone to help feeding or bathing if they needed it...as I just about managing to do all that and my in-laws didn't want a stranger helping them with these needs there was no other help they could give but benefits advice...I didn't feel right applying for benefits,my husband luckily still has a job so we're managing, looking after my in-laws wasn't about money...I just needed some ME time, some time with my son who has missed out alot the last 3 years since I'm constantley running around to look after everyone else and his had trouble understanding why mummy is always the one looking after them why no-one takes turns it been difficult making him understand...I feel for him o much but theres nothing I can do...I am now trying to make time to work on my own health aswell as try and spend some time with my son and focus on his learning as his not accademically enclined and needs alot of help...his SATs have started and I've tried really hard the last few week to try and help him through...It has been such a challenge Marlene...Its seems to be a nice day today down our end (Birmingham) whats the weather like down were you are:)?
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Date: 16.05.2012
From: Yasmin

Subject: Re: Hi:)

Hi Em:)

Thank you so much for your kind words and your warm wishes...I also pray everyone who is suffering in whatever way finds relief from it all...sometimes talking to others who are going through the same or similar is in itself a very powerful remedy...I am so trully grateful to the 'Man' up to there:) who has guided me to this forum...the people on here including yourself have really touched me deeply by taking your preciou time out to answer my post, I feel like a part of a very big family, I look forwards to coming online knowing I can talk out anything thats bothering me and I will get real good and sincere advice... praying for your wellbeing...x
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Date: 16.05.2012
From: Yasmin

Subject: Re: Hi:)

P.s Thank for the hug, it really felt good, returning XOX...take care:)
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Date: 16.05.2012
From: Yasmin

Subject: Re: Hi:)

Hi everyone:)...just an update my fathers med have been changed on Monday from Methotrexate to Sulfasalazine and Prednisolone (steroids), as the side effects of Methotrexate not settling...The specialist suggested steroid injections again but they havn't worked before so I asked if they would give him oral Steroid for short term and see if its makes any difference to the swelling on his hand, if the swelling goes down a little at least he will be able to do some excercises...

I also got the doc to re-iterate to my dad how important excercise was for him as previously nothing about self help was mentioned by the specialists...I feel its very important for consultants to emphasise to patients how important it is to stay active and mobile as much as possible and not just rely on orthodox meds to help them...They really need to work on all levels not just medication...I feel this is were the conventional treatments fail because doctors only see symptoms associated with the illnes they're treating not the whole person...the mental emotional side is overlooked rather than concentrated on as having a balanced view of your illness is the larger part of getting the best out of your meds...What do you think guys?

Have a great day everyone, you are all in my thoughts and prayers:) Speak to you soon...x
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Date: 16.05.2012
From: little gill

Subject: Re: Hi:)

hi yasmin!,you realy are taking on a lot with your caring roles!!,i know its hard but sometimes you need to step back a bit and look after yourself first.Im starting to try and deligate stuff to other relatives !! trying !! hey ! there a web site for carers that helped me a lot at the start or my caring roll!! with lots of advice from carer to carer! and also have a good rant!! lol !! its called .carers uk.com (forums) ..hope it helps ..take care xx
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Date: 19.05.2012
From: marlene

Subject: Re: Hi:)

Hi Yasmin, glad to hear your dads meds have been changed, fingers crossed they will be better for him.
Yasmin if your Dad finds excercising painful talk to your GP and see if he could have some Hydrotherapy, I found this so helpful and relaxing.
I would like little gill says try to delegate others to help you. You need to take some time out for yourself and your Son.
We all like to do the best we can for our parents, I have my mum living with me and sometimes when I have a bad day which is getting more frequent now, it is hard. My mum goes to a club three days a week she loves it and I get me time so it works for both of us.
I agree the Drs need to talk to your Dad more about what he can do to make his situation better. I find everyone will leave it all to us if we don't talk up for ourselves.
Take Care Yasmin and all my best wishes to youxx
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Date: 22.05.2012
From: Yasmin

Subject: Re: Hi:)

Hi Gill, I hope you are well:)...Thank you for the info on the site will look it up...Gill, like yourself I am also trying to delegate certain tasks to the other relatives but like you also said 'trying' because most times the timings are wrong for others or they feel they shouldn't have to compromise their lives, so it all falls back onto me again...I used to get very annoyed and very hurt but now I ask for help and if it doesn't come about I just get on and deal with the situation, instead of wollowing in self pity and creating untold stress...this way I stay more in a positive frame of mind...but any hints that can help are welcome;)p... Have a beautiful day:)!
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Date: 22.05.2012
From: Yasmin

Subject: Re: Hi:)

Hi Marlene:),

I pray you are well...Yes, I do try and talk up a little bit more than before and try to rally some help when I feel a little overwhelmed but its not easy...whereas before I felt so ashamed asking for help, I can be my own worst enemy sometimes...I felt eveyone has eyes they all see what I have to deal with, why should I have to ask for help when it needs to be given freely...but i've learnt over the years that there come a time when people who close their eyes to your plight need a little waking up in order to make them see...in the long run it is also helping them to become more aware of what other are gong through and how they can help ease someones burden alittle and become better people overall...Marlene, someone else mentioned the 'hydrotherapy'...I talked to my sister about it and she said that in hydrotherpy the cold and hot water is alternatively used to enhance circulation is that true?...i'm not sure if my dad can take the cold water brrrr.... xox
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Date: 22.05.2012
From: Colin W

Subject: Re: Hi:)

Yasmin

look up hydrotherpy pool , some have physio's in there helping you , our local Hydrotherapy pool is 34c , the heat helps relax the muscles & buoyancy of the water helps to work joints without load/weight on them

I myself can't use normal pool as my joints seize up because of the cold , not sure if other RA suffers are the same , your gp / consultant should be able to help you arrange something
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Date: 22.05.2012
From: marlene

Subject: Re: Hi:)

No they don't use the hot and cold water method (not at my hospital). The water is at a warm temperature, its not for swimming but excercise. I always had a physiotherapist with me. Like Colin said the cold water is not good. I also seize up in the cold water.
I found the whole experience in the hydro pool so relaxing, I still do the excercise programme under my shower.
Do speak to your Dad's Gp or consultant.
I hope this helps you!!!!
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Date: 23.05.2012
From: Yasmin

Subject: Re: Hi:)

Colin, Marlene,

I spoke to my dads consultant about it and she agreed it may help and to talk to our G.p about it but she didn't give much info about it that day she was kinda in a bit of tizzy to say the least so I didn't ask too much...On talking to my sister after I kinda gave up on that idea...but now I will make an appt with his G.p and get him referred...thanks guys:)!
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