Struggling

I've had a really bad time with my RA lately it's a real struggle at times saw consultant ladt week he gave me a steroid injection plus steroid tablets started methotrexate Friday was praying I wouldn't get side effects some hope been feeling really nausea and two days two days rang nurse she said not to take codeine to stop the latter as there's a bug going around it could be that .i know differance between a bug and tablet symptons after two days trying to cope with it I took a codeine at least I've had some relief from it all when I was in hospital same ward I rang they gave me codeine for it I think one of the hardest things is coping alone some days I see nor speak to anyone except my grandson when ge comes in to go to bed then before he goes out to work at seven am it doesn't help being alone all that time too easy to get down in the dumps I've two daughters both live over 100 miles from me but they cannot come over to help one because of her job and finances if she took time off the other because she has four children at school I hate feeling this needy but am feeling very low I seem to cry a lot most unlike me but am also still grieving the loss of my husband in March I'm finding it hard to look on the bright side of life

29 Replies

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  • I'm so sorry you are feeling this way and I know what a struggle it is as I live on my own and don't see anyone till the weekend so I sympathise with you . Many times I have a good cry and think what is next for me but we just keep going.

    Take care and best wishes to you.

    Trish

  • Hi Jeanslmn,

    I sympathise with you having to be told the 'bug going around line'. Sure there very well might be, but I had exactly the same told to me when I started methotrexate. In my case I had a bad reaction to it and over three weeks it made mr so sick. However, keep positive and trust in your gut instincts. When we are in pain, we feel more vulnerable and you are not needy, just being human! We are always here if you need to offload and talk. You are not alone on this site and even if you pop on every week or so, there will be support. Kind thoughts and smiles coming your way!

  • Thank you

  • Hi jeanslmn,

    I'm sorry to hear that you're feeling so unwell at the moment. It is a struggle at times. Hopefully your body will get used to the methotrexate soon. I know that when I tried codeine I felt worse but we are all different. I read loads of books when I was feeling low and rested- a lot! I spent time in different parts of the house and garden to relieve the boredom.

    This forum is great for support so keep the posts coming!

    There is also a helpline which you can call- they're great too- sending a virtual hug x

  • Thank you very much for your advice I will take it on board

  • You girlie have a lot to cope with right now and please don't under estimate the effects of grieving for your late husband in all this.

    I took my methotrexate with porridge and ate plain yoghurt a lot the following day when I first started the med. I also chopped fresh ginger into them to help. I also drink a lot of water, particularly on med day. If you have a garden and can get outside wrap up warm (4 season sleeping bag warm) and find a nice spot to sit and read in or have a leisurely cuppa in - it will help to lift your mood a bit.

    Right now you need to be in convalescence mode to give you time to emotionally, mentally and physically regroup so take it easy. Do some doodling, colouring, sleeping to radio 4 (other stations are available!), crosswords, reading, more snoozing, writing a poem/short story or two.... what ever you fancy or don't fancy doing is OK!

    Take care

    Ali

  • Good advice for us all! M x

  • Thank you for your support and ideas I will try some normally I'm a big reader but at the moment I cannot get into a book but il keep trying

  • Thank you I will give some of your ideas a try

  • in some areas there are support groups for this and it is a help to be able to talk to people in same situation as you maybe if you ask you gp or your rhumatolagist for list of support groups you maybe able to get help in talking to people in same situation as you. It is hard some times I feel like there is no light at the end of the tunnel but you keep going you try to be strong even when you feel so helpless have you got any good friends you can go and see in the day time just talking about things does help. Its probs impossible but is there any way you could move to nearer one of your daughters so they can help you when they can? you can always rely on us to support you on this site its been a blessing for me at bad times. I wish you all the best.

  • I agree tgis site is very supportive and informative I like reading the posts it's great to know I'm not alone fighting this desease today a hospital rang me to check if I had started my methotrexate when I mentioned how I'd been since taking it she's organising a district nurse to call into see me take a blood test and stool sample as soon as they've been checked they will give me correct treatment another r a nurse suggested on my next weeks dose to take just two of the tablets instead of four at once so I will give it a try I do want to give it a fare try Many people have told me how goods it been for them

  • So sorry you've been having such a bad time. Just coming out of a really tearful depressed few months so I sympathise. Could you talk to your doctor about taking folic acid more often? Might help with the sickness. You are only really recently bereaved so it's not at all surprising that youre feeling down even without the RA. I think we try to hustle people through their grieving way too fast in our society. It takes a long time to get over losing someone you love. We could learn a thing or two from the Victorians about this.

    I hope things improve for you. The amazing people on this forum are very supportive, I've found, even if you only want to cry.

    Wishing you all the best.

  • Thank you il keep trying and pushing forward I could move nearer the daughters but if I did I would not beable to afford a house like I have now in a very safe area from burglereies mugging etc unlike where they both live ones at one end of the Pennines the other ones at the other end

  • It's a difficult decision. Only you can know how you would feel about leaving your home, but you have to weigh that up against what support you might need in the future. My mum is 92 and my brother and sisters are trying to get her to move nearer to all of us in the South East because she had a bad fall lately and had to have someone with her all the time. It's a long drive for them down to Devon. I get down there as often as I can when I'm well enough, but not as much as I'd like, so I understand the advantages. On the other hand, it's her home. She has loved living there and she wouldn't get anything like as nice nearer London. Very difficult. Don't rush into anything without being sure it's what's best for you.

  • Moving nearer to your daughters wouldnt guarentee you would see them more. I have one daughter who lives 6 miles away & she very very rarely comes over to me mostly its me going to her home. The excuse is she fosters so her time is taken up looking after other peoples children, attending meetings, having social workers come to hers, filling in forms/diary etc., So when I have been really ill trying new meds to see which one fits me she hasnt been able to help. Im still not sorted with right medication. Mtx pills & injection no good & Sulfasalazine no good either.

    Like you I do get down & worried being on my own. Good luck in finding a solution but this site is great with very friendly people. x

  • Exactly what I thought about moving I don't actualy get on very well with one daughter the other her times taken up looking after her four children eldest and youngest both have ADHD so she's already got her hands full ,my other reason my eldest daughter lives just seven miles from me in residential mental health home , I like to go visit her regular when I can as I need to check she's getting proper care and his happy where she is she's settled there I couldn't move her to an unknown area unsettle her finding a good mental health is very difficult where ever you live .

  • Oh hun, I'm so sorry you are having a hard time. The loss of your husband earlier this year is just sooooo sad. Go ahead and have a good cry. You are still in shock and you are grieving. Give yourself time to adjust.

    In time the tears will fade and you will smile as you think fondly of your husband.

    Please understand you are never alone, we are here for you.

    Sending you a warm hug,

    Sue

  • Thank you ,

  • Its bad enough that your suffering with your illness,but you have lost your darling hubby on top of that as well. I suggest you see your dr and tell him what your telling us. We will always be on here to support you the best we can darling. You can have people all around you,but still be lonely as they have no idea the pain your in darling mentally and pshyically as well. Gentle hugs darling.xxxx

  • Thank you I will I've kept it to myself how I feel after loseing john fifty four years together is a long time time to get over

  • My mother is in the same situation as you. My parents were married for 51 years when my father died. She, like you, feels lost. It's just so bloody sad to watch her struggle with her grief.

    My father wouldn't want her to suffer so, niether would your John want you to suffer. Allow yourself to cry then wipe the tears and Live, Laugh, and take care of yourself. John would want you to live life to the fullest before you reunite with him. John is not suffering now, nor is he in pain.

    No one can just "get over" the loss of a 54 year relationship. Please talk to your doctor about how you feel.

    Join a support group for widows/widowers. Just talking to other people who actually know the pain that you feel can help you rebuild your life.

    sending you a big warm hug,

    Sue

  • Never thought there was widow widowers groups may look for local ones I will seek councilling once I'm able to get out and about after this flare up

  • Oh that sounds so tough. Your post really touched me and nearly brought me to tears.

    It is so easy to feel down when you're feeling like this. When i was off on sick leave from work I found the lack of structure and routine to my day really tough. I felt that made me feel worse. So I tried to build in little things into my day and made sure I got out of the house at least once a day to give myself a feeling of purpose, even if it was to walk to the corner shop for a pint of milk! Not sure if you feel able to do that or what is available in your area.

    You could maybe speak to your GP about an anti-sickness medication to take with the codeine? I really didnt tolerate codeine/opiate based medicines very well but the anti sickness medication helped to reduce the nausea.

    I really hope you start to feel a bit better soon. We're always here if you need a moan or a wee bit of support. x

  • Hi,

    I'm so sorry to hear of the loss of your beloved husband - people are right,others that think you should be 'over' the grieving period by now just need a good shake,or kick,whichever you prefer,as we are all so individual,and operate on completely different timelines,as someone else has already said,one day it will just 'click' and you'll start to remember the fonder times,rather than the loss,but until then,please don't beat yourself up for not adhering to someone else's timetable!!!

    Just like mhairi54 said,I too really struggled without a routine when I felt forced to take redundancy last year because I could no longer cope with the constant daily struggle of going to a job I once loved,but was now making my symptoms worse through the stress of a rotten manager who just didn't want to know,still,that's life I suppose?! Anyway,back to my reason for replying.... like I said,I really struggled with finding a routine,and also had issues of feeling alone as my partner was a lorry driver that used to work away from home from mon morn through to fri eve/sat morning every week. I had my darling cats for company,and they're great listeners,but I also found that apart from dragging myself out of bed to feed them I had no reason to get up,when suddenly I realised I had a garden that I'd never really taken any notice of before then. I now have several bird feeders,and part of my daily routine is to nip outside(wrapped up in layers over my jamas) and just potter for about twenty minutes twice a day,just cleaning and refilling the feeders - it might not sound like much,but when you think you have no reason,it really does make a huge difference,and also appreciate the smaller things I once missed around me. I also rediscovered the inner kid in me for the long nights when my hands felt upto it ... I've rediscovered Lego 😊 The house is now filled with my creations that I've steadily built on my good days(ok,so they're sets usually built for 7-14 year olds,but don't let that deter you). I really found that just doing something completely new other than watching the same tv day in day out gave me something to smile about,and also not left me dwelling on the pain if I couldn't sleep because of my feet,legs or back were hurting during the night. I usually just pop my painkillers,and then while I'm waiting for them to kick in,I'll just get my little box of Lego bits out and start to build until I'm comfy enough to settle back down for the night again. Like I said,it may not work for everyone,but for me it filled a void where I would've otherwise been stressing about being alone and in pain - and I find I can even do it if I'm wearing my soft splints/supports on my wrists and hands(I gave up on the boned version after giving myself a black eye one night when trying to pull the covers up 😳).

    I hope I've been of some use,even if it's just a good laugh about the black eye,but I truly hope you find some comfort soon. Take care of yourself,and yes,this is a time to be completely selfish and think of no one but you if you need to,sending warmest wishes of health to you.

    Nicki

  • Dear

    To echo Moomin8's suggestion, do consider giving the NRAS Helpline a call 0800 298 7650 or email helpline@nras.org.uk if you haven't already, even if you just want to someone to talk to. They can even match you to one of our telephone volunteers, all of whom have RA and are trained to speak to others on the telephone.

    With your Methotrexate, if you are experiencing nausea with tablet form it might be worth considering the injection form instead which often lessens the side-effects. Are you taking folic acid with the Methotrexate as well? We have an article on the NRAS website on Methotrexate which may help further but please do give us a call if you need any further information. nras.org.uk/methotrexate-in...

    Take care,

    EmmaS-NRAS

  • Thank you I will try I'm dreadful at asking for help or even talking to people about any of it it's been easier on here even my family say I never tell them anything so I'm going to change I'm going to ask and speak about it it's the only way il get through all this even will contact a bereivment councillor instead of just saying I will as soon as I get over this little set back

  • Was going to suggest a bereavement councillor, sometimes easier to talk to a stranger than family. You are going through so much. Many years ago I saw a homeopathic doctor who helped me through a very bad patch it helped me to deal with my RA as well. This forum is excellent with lovely kind people, helping you deal with your problems and passing on their own experience's. Take good care of yourself. X

  • Talking to a stranger is an excellent way of coming to terms with the almost grieving period we have for the life we had before and after diagnosis. As I was only 40,and a dedicated gym bunny when my symptoms first struck,I really found it difficult to adjust,and accept that it wasn't me being lazy,but my bodies way of telling me to stop and take time out - I ended up seeing a psychotherapist for a few sessions,it may seem OTT to some,but for me it was definitely the outpouring I needed to be able to come to terms with,and learn how to move forward with my life as it now is. I had family I could talk to(friends suddenly disappear when you stop being able to give lifts etc) but sometimes I just needed someone else to vent to,and for me it worked. I was a hugely private person,so it wasn't an easy decision to make,but I've never regretted talking to him,and would definitely recommend it to anyone else that's struggling to come to terms with things.

    Hope this helps you make the right decision for you and your needs x

  • I am so sorry to hear of your husbands passing and trying to cope with ill health. Thankfully you have reached out here for starters and now know it brings comfort in sharing. Having just joined too, I am learning so much. I would on a practical level suggest if I may, to not make any decisions of moving. Try not to even think or dwell on what would happen if -----. The timing of such an important decision has to be made with clarity for the future betterment of yourself. Presently, you poor Love, have to learn to be Gentle on yourself and pressure of even considering the future is too much. Time maybe doesn't"heal" but will when its ready, show you the right decision. Usually two years and later is the time gap for a move if its for the best----- Your best. When you feel better, look up U3A on net. Its been a life saver for me having recently moved to this country. Sending you warmth and comfort. X

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