In despair

Evie
Evie Member Posts: 14
edited 9. Oct 2017, 10:43 in Living with Arthritis archive
Haven't been back since I posted a comment about azathioprine since then have tried it for 4days and felt really ill so came off and phoned rheumatology who told me my consultant would probably want me to try it again . I am also moving towards a vegan diet as I keep hearing it is good for a lot of chronic conditions. Feel very alone with this gp said she didn't know what to do to help me and cardiology are holding up my double knee replacement and now I can feel my hip is going. I am now housebound and nearly bed bound. Have hardly any visitors and no family or friends (except one) who can help me since I had to give up work last Dec. Feel like I am sliding downhill fast with no one to catch me. Beginning to wonder why I am still here. Very frightened about the future and alienated from the professional help available. Feeling very sorry for myself!!! Don't know how much more pain I can take and very mixed messages about the effect of diet which is my preferred option. Any encouragement would be gratefully received

Comments

  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Oh Evie ((( ))). You are here because you are a very important, unique, valuable person even if pain and circumstances are hiding that from you right now.

    It seems to me that what you really need to do is talk to someone who understands about arthritis and all its horrible problems (including the loneliness it can bring) but someone who, unlike so many health professionals, has all the time you need.

    For that reason I'd suggest you ring our lovely Helpline people on Monday. I'm sure they'll be able to help. In the meantime - indeed, always - we are here to listen and empathise.

    Try to keep moving, as being bedbound just makes everything worse. I'd also suggest you forget about diet until you are feeling stronger. Any diet that cuts out whole food groups has to be undertaken with a great deal of care. There is a little evidence that a vegan diet can helps some people with arthritis but it's essential to ensure you eat all food groups. https://www.arthritisresearchuk.org/arthritis-information/daily-life/diet-and-arthritis/do-vegetarian-or-vegan-diets-help.aspx .You need all the strength you can get to deal with this disease.

    Maybe your GP could check your iron and Vit D levels. A lack of either of these will cause tiredness. But so does RA. And so does unhappiness. It's all very hard to deal with especially if you feel a bit cut off from everyone.

    Stick with us, Evie. And do ring the Helpline on Monday. No-one can cure you but I promise you things can be much better than they are.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Evie ((()))

    So sorry to hear that you are having such a rough time of things.

    As Stickywicket says, do ring our free helpline on Monday: its a confidential service, open to anyone living in the UK with arthritis and needing support from those who do understand what you are going through.

    Tel: 0808 800 4050

    For some good advice on diet, the web site has a good range of advice on healthy eating which you can read here: https://www.arthritiscare.org.uk/living-with-arthritis/healthy-eating-and-arthritis

    You are doing well by just coming here to chat to others who have similar continuing experiences. Stay with us and let us know how you get on.

    All best wishes
    Brynmor
  • Lady3106
    Lady3106 Member Posts: 17
    edited 30. Nov -1, 00:00
    So sorry to see you are feeling down Evie. Previous comments are very valid. Until you can phone the helpline why don't you keep posting. I think there will be many on here who will see exactly where you are coming from. I hope things look more positive for you soon.
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    I can't add to what the others have said so Im sending you some hugs (gentle ones) (((((()))))) you will be in my thoughts and prayers. Mig
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Evie I'm sorry to hear you are feeling so low. As the others have said the Helplines are there for such situations, but in the meantime(and for when they aren't available) Samaritans are there to listen to anyone in despair - not just the suicidal(tel.116 123). Being able to talk to another human helps to stop thoughts going round and round in your head making everything worse. I've been glad of them on more than one occasion in the past.
    Posting on here and getting things off your chest is also good - virtual sympathy is very effective, and there's a lot of truth in the principle of 'a problem shared is a problem halved'.
    As Sticky says this is probably not the best time to make radical diet changes, but you could perhaps consider looking at what you currently eat, perhaps keep a basic food diary, and get as much (factual!)information about vegan diets as possible, so that if you decide to go ahead in due course you will know what needs to be considered(and that might include the effects of drugs on nutrient requirements)
  • Evie
    Evie Member Posts: 14
    edited 30. Nov -1, 00:00
    Thank you so much for your kind thoughts and good wishes. I think it is the ongoing nature of this disease that is draining and the last 7 yrs have not been easy in many ways so my resilience is low - wot happens when you need a GPs or rheumatology appointment but you can't get there?! There doesn't seem to be a strategy for that and I feel as if people (professionals often) treat me like a problem to be solved rather than a person. I read that some people have paid privately for a consultation? Will also look on research about diet - am seeing a dietician soon if I can get there on the day - anyone know about the recent legislation re disabled access to services?

    Evie xx
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Hi Evie,

    Firstly, well done for having the courage to tell us how you're feeling - I know it's sometimes hard to admit when we're struggling. But you don't have to go through it all alone. As others have said, don't be afraid to call the Samaritans, and of course the helpline when you can.

    Keep posting and letting us know how you're getting on. We're all here for you.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I can answer some of your questions, Evie.

    For hospital appointments, if you can't use public transport or get a lift, the hospital department will book transport for you. This is usually an ambulance with seats which you share with other patients. I used to have to do it after I'd to give up driving before Mr SW retired. For a GP appointment you just have to book taxis.

    Please don't try to control an autoimmune arthritis by diet alone. A good diet will help but a faulty immune system won't be cured by diet or anything else. Only the meds will hold things back.

    Access to services? Try here http://researchbriefings.parliament.uk/ResearchBriefing/Summary/SN01749

    How are things today?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Evie
    Evie Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi everyone

    Just to say I have looked up the diet advice that stickeywicket gave me and it was more helpful than I thought. Feeling a bit more positive today changed the bed earlier and though it took a long time I felt a sense of achievement. Took some pain relief to help me manage it - small goals I guess but I think it helped to be more active. Have been up and about most of the day. Will ring helpline on Monday. I can drive but weight bearing (ie walking to hospital from car park and walking around hospital) is very painful and slow - tend to double up on pain relief on those days but can’t do mornings - need a new perspective to deal with this stage of disease where unchecked joint damage is taking over

    Thanks again for listening and responding!

    Evie xx
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hey, well done you :D That must have taken a huge effort but so worth it for the feeling of achievement. It was very sensible to take the pain relief to make it possible. No wonder you're feeling good about your day. You've earned it :D

    Do you have a Blue Badge for parking, Evie? That would mean not as fae for you to walk. And maybe a rollator would help as you could sit down and ret when necessary.

    I'm sure having a chat with one of our Helpline people will be good. I shall be thinking of you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Evie

    How are you feeling today? Did you make that call to the Helplines?

    Do come back and tell us how you are getting on.
    Best wishes
    Brynmor
  • Evie
    Evie Member Posts: 14
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi Evie

    How are you feeling today? Did you make that call to the Helplines?

    Do come back and tell us how you are getting on.
    Best wishes
    Brynmor

    Hi Brynmor

    Thanks for keeping track of me! Still struggling physically but in a better place mentally now I have taken more pain relief. Spoke to helpline Tuesday and received a pack with info today. Not long for heart monitor now (10 Oct) then hopefully things will move a bit quicker towards knee ops. It is the waiting and watching my health slide downhill that is so worrying. I think some people can adjust to disability more easily than others. I can’t so keep trying to fight it and deny it and wear myself out.

    Thanks for your support it helps to not feel so alone.

    Evie x
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Well done for ringing the Helpline :D I think arthritis is bad enough at any time but, if we feel alone with it, it's even worse.

    As you say, not long to go now for the heart monitor. Let's hope all is well there and the op(s) can go ahead.

    On here we have a thing called 'pocket duties' which started years ago when someone was anxious about an appointment. The idea is that you ask for pocket duties and we all, virtually, crowd into your pockets on the day so that you can have supportive company. If you fancy that just start a thread ready for 10th :D
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Taratemperance
    Taratemperance Member Posts: 23
    edited 30. Nov -1, 00:00
    Hi Evie,

    I'm a newbie so still finding my round the forum etc.
    I feel I want to give you a cyber hug if you would like one.
    I've been a Nurse 20yrs now & was a District Nurse for 7yrs, I've seen the difficulties faced by housebound people. One of the biggest issues is isolation & loneliness. I've lost count of the hands I've held, hugs I've offered (and enjoyed) the tears I've dried & it's as important as 'treating' the patient.

    I'm glad you seem to have made some positive steps since your first post. I'm considering ringing the helpline myself as I'm struggling & worried what the future brings.

    Be kind to yourself lovely lady
    Xxx
  • Evie
    Evie Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi Evie,

    I'm a newbie so still finding my round the forum etc.
    I feel I want to give you a cyber hug if you would like one.
    I've been a Nurse 20yrs now & was a District Nurse for 7yrs, I've seen the difficulties faced by housebound people. One of the biggest issues is isolation & loneliness. I've lost count of the hands I've held, hugs I've offered (and enjoyed) the tears I've dried & it's as important as 'treating' the patient.

    I'm glad you seem to have made some positive steps since your first post. I'm considering ringing the helpline myself as I'm struggling & worried what the future brings.

    Be kind to yourself lovely lady
    Xxx

    Hi Tara

    Your kind words brought me to tears as you so understand how I am feeling right now - it is frightening to be just left to manage on your own - at present I have an important appointment tomorrow and I really dont know how I am going to manage to get round the enormous hospital or even to my car outside my house - I also worked for the NHS for many years

    So what is happening for you? it is worth ringing the helpline but I am here if you want to talk - sometimes we are so used to caring for other people we forget to look after ourselves and ask for help I think that maybe this is what this condition teaches us

    Please let me know how you get on - I have received some lovely support from this forum

    Take care

    Evie xx
  • Taratemperance
    Taratemperance Member Posts: 23
    edited 30. Nov -1, 00:00
    Hi Evie,

    I rang the helpline today & spoke to the lovely Linda. She reassured me that I have everything in place thus far. I'm just a worrier & by admission a rubbish patient! It's early days for me so I just need to pray for a drug that suits me & see how it goes.

    Thank you xx