Unsympathetic Family

[tazman3]

I was diagnosed with RA 2 years ago. I have felt ill for years but put it down to OA, Fibromyalgia and menopause. My consultant was of the opinion that I have had RA for a very long time. I was relieved to have a diagnosis but worried about how I would cope living alone.

At present I am on two injections, MTX and Imraldi. I don't mind the jabs, but they are not doing anything for my symptoms which seem to be getting worse.

The main problem I have is making my family understand what RA is! Lockdown has had a really bad effect on my elderly parents who are struggling to cope. My mother has dementia and dad has deteriorated very badly. I believe they should have a carer to help form a routine for everyday things and to check they have taken their meds.

My brother seems to think that I should be doing anything that a carer would and won't listen to anything I say. I do as much as I can manage. It's all about money and if I could afford it, I would pay myself. They are not poor, but come from a generation who don't believe in paying for anything if family can step in.

Depression and anxiety is very strong down my dad's line and it has caused a lot of problems in my life. I have had years of therapy that have taught me that my problems come mainly from my very difficult relationship with my mother. Now that she has dementia (Parkinsons) she doesn't hide her dislike of me anymore and hates me being in their house.

How can I make them understand that RA is not just a bit of wear and tear? I can barely walk in the mornings and struggle to get down the stairs. I get so tired it makes me wonder what the point is. My friends tell me to stay away and insist that they employ a proper carer. They know the problems I have had in the past and worry that my mental health is suffering. Again.

I was in a good place but guilt is pulling me down again. Where can I find documents that might explain things to them and stop my brother bullying me.

I may not look ill, but I'm screaming inside.

Sorry for the length of the post, but I don't know where else to go. No chance of getting through to my docs and they just fob people off anyway.

[Bambi65]

Ive had RA for years. Im on Methotrexate 4 pills one time a week. Took about 3 weeks for all the discomfort to stop.

[adycol]

Join you local Nras group they will give you lots of information and they meet up monthly so you have people to talk to about your Health and they can give advice good luck

[FamilyHistorian]

I have RA and had it for 40 years. Up until Xmas’19 I was on 22.5 MTX and a range of other drugs including Pred.

At that point I had an op on my heart and that together with pneumonia & sepsis put me in ICU for nearly 3 months. Many of my RA drugs were stopped. My MTX was restarted @ 15 gm because of my weight loss. This has now been stopped because I have pulmonary fibrosis caused by pneumonia/ methotrexate/ icu trauma. My pred, which I have been on the whole 40 years was increased when I came out of hospital and now they are aggressively getting me to reduce it. I’ve got a further 6 weeks to get down to 5 mg and then the struggle will really start and it will probably take a year to come off completely. And of cause the pred has caused cateracts.

My RA came on very quickly in the early 80’s and that plus the depression was debilitating. I fought it with a vengeance and since I have had multiple ops and joint replacements. What I found so difficult was having heart problems which I thought was in fair.

The problem is that when you look at me I look quite well and the truth is far from that.

When I came out of icu I joined an icu support group and that was the best thing I did as they understand and have been through the mill. I have also been on a course of CBT and apart from dealing with the icu issues addressed my depression from when I first had RA. I have learnt strategies one of which is to care for my self. This doesn’t stop caring for others. You need to know when to say no and when to ask for help.

RA is a sole destroying disease which others don’t or don’t want to understand. Don’t be afraid of hiding the tools that you use to support you. It took me a long time to use sticks but that one step made such a difference both my mobility and my safety. You shouldn’t be helping your parents as it is not safe for you or them.

I really do think finding a support group will be a big step forward

[Poojapanchamia20 Administrator]

Hi Tazman, completely understand this ordeal of explaining the invisible symptoms to our family members. I know it's not easy, but I urge you to stay strong and fight through it. Attaching some of the links that could be useful to walk them through how RA takes a toll on our body: (1) For information on RA - nras.org.uk/information-sup...

(2) For some personal life stories of RA patients - fierybones.com/

Apart from this, I would like to say that the FieryBones community is always here to support you. Please feel free to reach out.

[Gloriana]

I feel for you ❤️. I have the same health conditions. Everyone is different but this is what I would be doing. Separate the problems, you, parents brother. Get 3 sheets of paper and write issues, everything you can think about. This gives clarity and stops you going around in circles and everything going around in your head. Bottom line is your parents need support ( I used to be a dementia support worker for Alzheimer's Society). You could get them involved then you won't have to do anymore or you could go to Social Services and ask for an assessment. SS do carers, financial and assess your parents (sorry can't remember what that one's called) I also believe this is a safe guarding issue as your parents are not getting the help they need and it is limited as to what you can do due to your health. You can then work through your issues less stressed ( I trained as a Counsellor too) and counselling could help you sort your head out ( no disrespect intended). As for your brother he should be more supportive of everyone but he is not, I would print off any fact sheets you can find on your conditions and your parents and respectful ask him to read and try and understand them then give him a wide berth if you need to. All the very best I do hope this helps, there are no easy answers but if you need me to clarify anything just let me know. I genuinely care. I hope I haven't said anything out of turn I was only diagnosed with RA on Tuesday and fibro 2012 and joined the group yesterday

[tazman3 in reply to Gloriana]

Thank you Gloriana, I appreciate your message. Since my post I have been through a lot of stress and anxiety. My consultant told me to stop all RA meds as my white blood count had dropped. It could be stress related and I am now waiting to start Tocilizumab.

A lot of what you suggested I have experienced. SS were less than helpful and just went through the motions. Dad has been diagnosed with Vascular Dementia and begged me to find him a place in a home. My mother was making him miserable and she has become violent towards him and me. I was so lucky to find a place just 5 minutes away from my home and it is lovely. Although visits are limited due to covid and with Dad being very deaf, I can't really get close enough to ask how he feels.

After a lot of shouting at me (bullying) I refused to connect with my brother. Something changed after I arranged for Dad's move and he is much more respectful towards me. He has now arranged carers for mother and I feel better. Apart from watching my Dad get further away from me as we were always close.

Thanks again.

[Gloriana in reply to tazman3]

Awe, good and not so good news but it sounds like you're getting there and I'm pleased for your progress, keep going!Think of me today please, I'm taking to my boss about my diagnosis and I hope she will be supportive, I've only been there 6 weeks. Take care and be mindful of the stress levels Gloriana

[coralflux]

Much sympathy tazman3. My mum is rather poisonous too! I am newly diagnosed and as an academic immediately started reading, so I am going to recommend a book - although I appreciate that books are difficult for some. The book is by Kelly O'Neill Young (also known as RA warrior) and called 'Rheumatoid Arthritis Unmasked'. She makes a pretty convincing case for changing the name from Rheumatoid Arthritis to Rheumatoid disease because of the persistent minimising of RA in the medical profession and in society. It is a chronic and serious systemic autoimmune disease that because it often manifests as 'stiff joints' has been distorted in people's minds to being just that.

Anyway, maybe you can get your brother to read the book, at the very least perhaps you should start referring to it as Rheumatoid Disease? Small crumbs, I know.