My mum and RA.

[rachieroo33]

Hello, i was just wanted to share my story with you lovely people. I still live at home with my mum im 24 and my mum is 53 it is only the two of us. She started getting symptoms of RA about four years ago, and ever since it has worsened. When my mum first started getting symptoms she knew what it was as her mother (my nan) had RA so my mum had seen the pain what her mother had been in before. My mum went to the doctors about the pain in her feet, the doctor (not her normal gp) told her to wear high heels! Yes high heels! But as time went on my mum knew that something wasnt right, and she went to see another doctor (not her normal gp) to recieve yet again, another fob off. The third time she finally saw her doctor and my mum broke down in front of him and he finally took her seriously, she finally got refferred to RA unit at the hospital, Where yet again she broken down. My mum was a very heavy smoker upto 40/60 a day, yet the RA clinic kept nagging her to give up smoking. My mum told me that she feels like she doesn't have control on her life anymore and that everyone else is telling her what to do. Anyway after months of trying to get medications right, her toes are now totally mishaped and also now her fingers are going the same also her finger nails are now going bumpy? So my mum is now on the maximum dosage of Methotrexate, she takes 8 tablets every monday, she is also on Sulfasalazine 2 aday, Adcal 2 day,Folic acid 1 day, And Naproxen but only when she is in a lot of pain she taken that. she also takes paracetomal and ibuprofen like they have gone out of fashion!(She also takes aspirin 1 day but thats for her eyesight, so totally different.) As the doctors have said the RA is still 'active'. She also has every fornight a blood test. But my mum being stubborn keeps saying she is going to stop taking her medications, i keep telling her that she has to take them. She says she doesnt like pumping her body with tablets. My mum has good days and bad days, she has given up one day of work she works 12 hour shifts, one week she works 21 hours, the next 40 hours and that rotates every two weeks, most of the time she looks knackered. But yet on her days off, she will not rest!!! She's out mowing the lawn, hoovering the house, anything which doesn't involve resting, (its actually really annoying i mean our house is spotless, there is only so much cleaning you can do!) She usually has a rest in the afternoon when she has truely knackered her self out, but then she's back again, doing anything what doesn't need doing.When i tell her to chill she tells me she gets bored. But its like she has complete ocd and as the RA gets worse she just cannot relax. Im glad to say she has given up smoking, although i know she still has the puff here and there, especially when her sister comes round! But anyway enough ranting, thats my story, anyone in the same boat? Rachel

[Harsh13061994]

Truly inspired by her spirit.....

[Rockpool60]

Hi Rachel

Firstly what a wonderful daughter to love and care about your mum and support her like you are doing. I can appreciate your mum's quest for keeping busy as I am very much like that too. I am 53 and only diagnosed 2 years ago. Some of the drugs made me very ill and ended up in A+E but after saying so to some drugs I seem to muddle along. Even though I am in pain I try and keep going like I did pre-RA and have been told on numerous occasions that I will eventually hit a wall of what I can and can't manage by my OT and Consultant. Bottom line is with me I think I fear the day when I won't manage. I also get rows from my family to stop doing things and take it easy but afraid if you have a busy spirit it is difficult to change. Sounds like your mum is a wonderful lady and has a huge spirit. Best wishes to you both x

[MB11 in reply to Rockpool60]

BTW, I also appreciate her request for staying for busy!! It's something we tend to do. Out weigh ourselves on good days, making bad days worse

yet to have the energy as most did at time a ago.

[benjijen]

What a lovely daughter you are. I was initially resistant to slowing down. I think it's because we know we're getting older and this disease seems to bring that forward. I pace myself better now. Yesterday I had my niece's 30th birthday do and I knew I would find it difficult so I did as little as possible during the day which enabled me to drive 20 miles each way and stay for a few hours at the party in the evening. If I'd done more during the day I wouldn't have been able to go. I work full time and so use weekends to catch up on things. Your Mum will learn to prioritize when she needs to. Take care.

[Prairie]

Hi Rachel it's lovely your mam has the company of what you sound to be a very caring loving daughter who looks out for her...I sometimes think when people and I know myself when we are diagnose with a chronic illness we sometimes can't accept that our every day life style in some ways has to change...your mam sounds like she is trying to manage her every day chores around the home...work...which isn't a bad thing...but she also has to try understand her body also needs to rest...I know when I'm having a flare I'm no good to anyone and what ever I'm suppose to be doing doesn't happen. My minds there but not my body...and sometimes we don't have a choice....and it's very hard for people like your mam who are on the go all the time...to find a way to relax...it's lovely how you look out for her...sending you both hugs Nicola xxx

[Hidden]

Hello Rachel,

Thank you for posting. It's really good for us to see and hear the relative's perspective of RA. I think that it can be too easy to forget that often it is the whole family who are affected by this horrid disease.

Looking back to the early stages of my diagnosis and from other posts here in the past I suspect that your mother is going through a period of denial. This is a pretty common process I'm afraid. It sounds as though she is trying her utmost to live her life in the way that she did without having to make allowances for her illness (hence the need to clean and the reluctance to take the meds).

It must be really difficult for you to watch this knowing that she is not helping herself but a diagnosis of RA can affect us quite deeply, it is like a grieving period for a life that we have lost. This is all guess work on my part but it does sound very familiar. Losing control of the life you lived is a pretty big deal emotionally.

If your grandmother also had RA your mum will have witnessed the pain that she went through and is probably telling herself that 'she is not going to be like that'. If approached gently and cautiously, however, it may be useful to ask her what it felt like for her to see her own mum in pain. Be honest but non accusing and tell her that you are not sure what your role is but above all, let her make her own decisions about what she can or can't do around the house. I know it will be very difficult but it is the only control she has at the moment and she will learn to pace herself in her own time.

The good news, however, is that the medications that are available to your mother are considerably more effective than the one's available to your Nan. It may take a while to get them right and these early stages are really tough but with the right medications many RA patients do go into periods of remission before permanent damage to their bones. Early intervention and aggressive medical intervention seem like the way to go.

I'm pretty certain that NRAS will have some information for relatives on their main site. Click on their logo in the top right-hand corner of this page. Above all though, continue to be yourself. Try not to feel guilty if you are sitting watching tv while she is charging about the house exhausting herself but try not to blame her either. Maybe ask her if there is anything that you can do or offer her a cup of tea every now and then. She will know then that you have noticed and care about her and if she says no leave her to make her own decisions.

You sound like a wonderful daughter. Good luck.

Judy

[rachieroo33]

Thank you for all your lovely comments, really means a lot! It is a horrible diease and I know how much pain it causes, I can't begin to imagine how painful it is. But your all amazing people and don't let RA take your spirit, thanks again Rachel

[Trendyliz]

I am in exactley the same place as your mum,working long unsociable shifts too,and I have a daughter,much like you,I am proud of her,but we are too young to stop,the drugs help but if I m like your mum we are not going to let RA get to us

[Hidden in reply to Trendyliz]

Hi Rachel! I just want to echo what Liz has said, your mum is still young like many of us when this evil disease decides to strike... Maybe it's her way of coping and I can understand that as I feel the same until RA stops me from doing the things I want!! You sound like a special person who has not only gone to the trouble of finding this site but posting about the worries and difficulties you and your mum have, your mum may be unlucky having RA but she's lucky having a supportive, caring daughter like yourself :). Wishing you both all the very best x

[Lorcha5]

I have symptoms like your mother and I am 59 who had a father with RA. I get very restless at night ....can't stop twisting and turning and therefore causes fatigue during the day but whatever RA does in your body I think makes you keep moving .....it's annoying because you are always tired .....it helps though that you are being very supportive and concerne for your mom and she will appreciate it...

[m1a2c3]

keep it up Rachel your doing good , me too like your mum cant sit still , ive just had a knee replacement and find it hard just to sit , you have to keep going or you will find some one doing things for you and that's not going to happen for a long time yet , shes lucky to have you ,x

[Trendyliz]

by the way we call it crunchie..........

[Hidden]

You seem to be a very responsive daughter, and you should be congratulated for the attention you are giving, Life can be a terror because it will never get better and She will eventually need to slow down

Good Luck, well done

BOB

[MB11]

Be glad the smoking has ceased, that's the one thing my RA was so serious about. I didn't even smoke cigarettes just a cigar here and there. No more though it's so bad for RA patients.

[Sharon56]

Hi Rachael just want to say the same as everyone else your Mum is lucky to have you. I am lucky to have two daughters and my youngest who is 25 still lives at home. I never really think that deeply about how it is for her, so thank you for making me think. My daughter is definitely my rock she listens to me and encourages me and of course worries about me.

I find it hard to rest too we all do. However I dont feel guilty when I do having had this disease for about 7 years. When I was first diagnosed I was so shocked and maybe in denial but you do get over that. As you say your Mums Mum had RA it is sometimes worse because you know what to expect. However thinks have improved over the years and still are improving. Keep us posted about your Mum. God bless you both and congrats to your Mum giving up smoking.