I have not been on here for a while, and I now really need some support. Please!!!!
Trouble is I am so lonely - sad when I seem to have 80 + friends on facebook - but no one (except Sylvi, Debbie and Verity ) really comments on my status's. I think that I have exhausted the RA thing - you know being in pain, tiredness, the weather - I have always tried to put a brighter side to my posts, so that I dont sound too miserable.
Anyway - I know I am depressed, I am on medication, but reality has really kicked in when I re-read my application form for DLA - I saw just what my life has become - I am a not the strong - independent - wonder - mum - wife - 'can do everyting in lighting speed time' girl - No, I have replace my can do - with I can not do, can do with some difficulty, or can do on some days!
Tiredness is big problem for me - just climbing the stairs to go to the bathroom, and I need to lie down; going back down I have to sit down again; I have just put some washing on and had to carry it in several lots, but had to sit down before I could turn it on. I do work - 8.30 to 12.10 and some days I wonder how I do it - most of my work means me having to stand up, I have had a work place assessment, but am still waiting for my perching stool and trolley (as you can understand, with my work history it is not easy for me to ask for help as the management do not get my condition) I get home and am so tired I have to rest for an hour even though my tummy is complaining!!!! Everything takes so long!!
Here is my humourous side - I enjoy washing up - nothing strenuous - I just love the hot water, soothing my swollen, painful hands - and feel like I have achieved a chore that my husband really doesnot like doing!! Yes!!! I can still do that one....... I have to have a sit down and rest after, but my hands are warm!!!
Im going to see my GP tomorrow, she's new to the pratice as my normal GP has been on long term sick - she is still getting to know me, and has noticed that there is not much 'personal' information about me on my notes - I am a bit angry, as most of the time I have to go I am usually crying or worrying about my condition - I had no idea that GP's notes don't include personal info relating to depression, worrries, pain concerns etc.
I have written some notes for her, as she seems easy to talk to and has rung me twice in the last couple of months. I wonder if she might have some suggestions for me!!!
Anyway, sorry this is so long, I just feel empty, lost and a bit sorry for myself. I do hope you are all feeling ok, or are coping with your conditions xx
Love to you all, and virtual hugs too
Pen
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PJ68
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Hi PJ I too find it difficult to do things but I manage by having lots of rests and cups of coffee so you are not alone and I am sure there are plenty more of us and when you sit back and look at your day, work out and you will find you have done more than you think you have I know it took me all day to get my sitting room cleaned last week as my Friday fairy was sick and she does my whole house in a morning but I felt quite pleased with myself you are not on your own so dont worry and rest lots
I did make myself a chart to encourage myself to only do a few things a day - but recently got disheartened as I had several days where I hadn't done anything!!! I suppose I forgot just how it takes out of me to clear a table, dust it, replace the candles etc and move to the TV stand - I can only look at my hoover, cos I cant even push it!!!
I will rest and build my strength up!!
Pen
Notes are good I took some as I have been in a bad way since beginning of december as I got a cancellationappoint with rheum department registrar.. he even kept my hand scribbled
notes .. get some help from your Gp or ring your rhuem team.. you arent alone, Im sorry I
havent contributed much but i Have been and .am poorly too and my dad got home from hisp( big cancer op) earlier this week in the snow! after over 2o days in hospital,
Oh please feel free to personally message me and I will give out some personal contact details if I can help,*( i dont routinely give these out but if I can help I will face book can be a mine field and I dont freeyt use this as I have to be careful of posting in public domain as I have professional registration and inapropiate stuff like a silly face book comment can cause me issues professionally, Sylvi is a real star as are some of the other members.
Have you considered counsellng or seeing a pain specialist.?
I normally work too 27.5hrs but my medication has ceased to be effective so im off work which as you said is scary
I am sorry to hear you're not good - I hope you feel brighter soon xx Sorry to hear about your dad too - hope he is doing well.
I would very much like to message you and will do, thank you. I had counselling, but after being told that the girl I was seeing had been trained in RA and associated conditions, I was open and hopeful - unfortunately I think she was bored of my tears and worries and after two sessions said that there was nothing she could do for me.
My GP today has increased my Dosulepin to the max and has said that if this doesn't work she will refer me to a pain clinic - I have nothing to loose, and so tonight I started my new dose and will see what happens - at least its the weekend n I dont have to drive.
I only work 18.3hours now, and have now idea how I ever worked a 30 hour week!
Pen, why didn't you let me know how hard you have been in and suffering. My darling friend i would have spoken to you and done my best to cheer you up;. It seems your new dr seems to want to get to know you. So for that sit down and write a list of drugs,how you feel, what you can and cannot do. How you feel emotionally,that will all help you to get the help you need.
The weather isn't helping me either. I am having a few bad days myself,but it will do me good if i can help you.
Oh Pen, I really do feel for you and I recognise everything you are saying as I'm sure most will on this site.
This disease knocks us for six and it is difficult to cope with all the things that we never gave much thought to when we were fitter and more able. I used to get very frustrated when I couldn't manage to do something like clear the leaves up in the garden. More recently I have not been able to clear the snow from our front path to make it easier for my husband to get to his motorbility vehicle to go for his dialysis. But thankfully some kind nieghbours did it for me.
Making adjustments is the key to coping I think. Like I only go to one shop when I do my food shopping, because to do more than that just pushes me over the edge into total tiredness. I suppose I have had to think on these lines because I am my husband's carer and so my main aim is just to do what is the most neccessary things that need to be done that day.
All the time I am thinking what will happen if I wear myself out, who will look after him If I can't do it myself.
Loneliness is a different matter altogether, and it is so easy to do everything from our armchairs because tiredness rules sometimes. I love facebook too and to some extent my social life has revolved around my lap-top, particularly so in the cold of winter.
But it sounds like you are down in your boots at the moment, depression is a real fact of RA and so perhaps you ought to seek some help with that from your GP. Also, perhaps you could have a think about your daily life and make a few changes (if possible) to make it a bit easier for yourself. None of us are the people we used to be because of RA, so you are not alone in this.
Please be kind to yourself and I hope your chin will be lifted very soon June xx
June, my laptop is my lifeline as well. There are loads of people who know exactly how i am feeling and there is always someone to talk to. I have american friends who are about during the night when i need someone to talk to. xxx
Thank you for you message, I am already realising that this is where I will be able to share and gain strength!
Look after yourself too x
Pen I don't use Facebook but I hate the idea of you feeling so low and alone. Please come back in here more often and hopefully we can all work through these winter months together and you will feel happier for it. Tilda x
I have missed this site, and know I will find my happy place here.....
Will see you soon !!!! Pen x
Oh Pen I am so sorry that you are feeling so low, this ra is hard to deal with, the pain the sudden interuption in our lives, the unfairness of it all, I do use antidepressants and they have helped me such a lot. I am going to try and get off them this year but if i begin to feel as low and lost as i was before i will go back to them.
Your GP does sound nice and I hope that you get some good advice and medication from her. Seeing your problems written down probably does bring home very harshly the impact that this disease has had on you. Maybe it is now time to shout a little louder to the world that you are not feeling so good and sometimes you just can't keep smiling.
My anti-depressants have been increased today so I hope I will feel the benifit of them soon - I know I need to sleep, and after 3 years of little or no sleep has really taken its toll. I do think that after a reasonable nights sleep you feel a bit better anyway, and things can be looked at in new light........ thats my plan anyway!!!!
I hope to be smiling a bit more, and after reading these relies it has given me hope!!
Oh, Pen, you poor thing. As others have said most of us have found our lives changing in ways we wouldn't have chosen. Four years ago my career as a secondary school teacher was thriving, I had just bought my first horse, soon to be joined by my daughter's pony, as my daughter, then 9, was getting older so my life was getting free-er, I was living at a hundred miles an hour and enjoying every moment of it, then wham!
Even after my diagnosis, almost exactly three years ago, I believed that it was just going to be a case of getting the drugs right and I would be back on the case. I would beat this. It only dawned on me gradually that this wasn't going to be the case.
The thing that has helped me to get my head round this better than anything else was having counselling. The first series of sessions was where I was able to talk about how I felt about the diagnosis, how I was going to adapt at work (and ask for support and deal with unhelpful management) and how to move forward. Two years after that I was back with the same counsellor, dealing with the end of my career and accepting the need to leave that part of my life behind. I can't recommend it highly enough - someone who is paid to give undivided attention without judging or giving advice for an hour at a time. Mine was arranged through my GP, so definitely worth asking if it's available through your practice.
Your new GP sounds good. Definitely take notes in with you, and ask for help - think about what would help you the most.
There are lots of Facebook rheumatoid arthritis groups out there - join lots of those and see if you can find some more rheumatoid buddies who will understand what you are going through. Some are chattier than others, I think. Also, it may be worth seeing if there's a real life face to face group in your area or at least within striking distance. Though that I can be hard - I was going to go to a meeting about fatigue but, you've guessed it, I was too tired.
Fatigue is a killer. The worst thing. And the thing that doctors understand and deal with least of all. It was fatigue that did for me and my job in the end.
Keep talking, keep blogging, but most of all get your GP onside.
I think as a mum we think we understand fatigue and sleep deprivation - but its nothing compared to this...... I just can't get to grips with yawning so much, but by 5pm I am ready for bed!!!
I think my GP got me yesterday, and was interested in making sure I get to grips with the Fibro, she has ideas, but is taking things slowly - mainly to make sure I am not overloaded and then get anxious!!
Nothing worse than feeling rubbish and tired on cold January days...even if you had energy to start with the weather would knock it out of you. I really hope your GP appt will help give you a plan to get back on your feet, I find that when I'm bad I can drag myself down even further as just can't see a way out. But there will be one somewhere, and it sounds like you have a supportive family so I hope they can help you through this rotten period. And maybe your GP could push for you to get an appointment with your rheumy soon to see if there is anything else that could be done to control your RA as also sounds as if that's not in a good place right now either? It's awful when you are just flattened by exhaustion, so I really feel for you. take care. Polly
New people seem to be on here, which reminds me just how long its been..... I feel very loved right now, the support on here is just amazing - thank you xx
Hi Pen, I hope by this time you are feeling a little better because real people on this site care to respond to your need. I am with Dotty on the talk to a professional! I was referred to a OT for pain relief and help and the best bit was she really listened and I finished up getting more than physical help; my emotions were taken into consideration and she showed me strategies that worked like CBT(cognitive behavior therapy) although being a cousellor for women in crisis, I should have known what to do, when the shoes on your feet sense goes out of the window. I really hope you get the care you need right now, as these feelings won't last and it's important your GP gets to know the real you! Good luck with your appointments.
Love Carol
Ps Sylvi is great and a fantastic support to all of us.
I so sympathise with feeling down after listing all the things you can't do. I often feel much more like a sick person after I've seen a health professional - especially the OT! - after describing the difficulties.
What I have done is to turn those things into positive statements.
I can't do this but I can still do this...e.g. I can't do anything after I have struggled up the stairs - but I can still get up the stairs if I take it slowly.
This just helps me personally to keep things in proportion.
Pleased to see you too have developed the knack of turning negatives to positives. I really found it got me through the worst times with cancer & RA. I realise this is just too hard for some people but worth promoting as a strategy. Good luck
I had got myself in state, and yes seeing things on paper was depressing, but I get your positive vibe - and I will try hard to adopt these.... I do get up the stairs, eventually, but its hard when you are 1/3 up and realise that you REALLY have to go......,
Pen, I do sympathise with you, and hope your new doc can help with your problems. I think the fact that you have come in here and talked about it will help enormously.
Hi Pen so sorry you are feeling so low.It is hardly surprising when you consider all you have to do together with suffering this terrible disease. You are amazing in being able to hold down a job You are still a wonder mum. My contract is only for two days a week and I have struggled at times with just those hours. Really hope your gp can support you. Keep posting and just be proud of everything you can achieve each day - may not seem much to others but sometimes to us its a major miracle
I think that the tiredness is as bad as the pain. If anything it is more debilitating. I think that we try so hard to be strong, and put on a I can cope face that people think we are fine and are coping.
You need to talk to the Dr be open and honest about how you feel, ask whether meds are making tiredness worse.
The hardest thin ( I haven't managed to do it yet) is to think about all the things you can do, even if it is slower.
I have just joined the WI, just as a way to meet people as I get very lonely.
The DLA forms are horrid, they are so depressing and make me feel like a useless freak, but they are a means to a end, and do not represent the real you, just the medical model.
Be kind to yourself, treat yourself like a good friend would treat you.
Remember you are special, and have many caring and understanding friends here.
Your message is so true, we do put a brave face, people don't like a misery-guts, but really, thats how we feel!!
My doc was great, my meds for sleeping are not high enough, so I have increased them and will see what happens, but I did have a lie in this morning - lovely!!!
I just wanted to say thank you for all your messages - I will reply to all of you individually - but just to put into perspective what your messages mean to me, I came in from work at lunch time, managed to make some scrambled eggs and began to read your comments - after about the 3rd or 4th one I had to stop because I couldn't see the screen as I was crying so much!
How wonderful to have such support, just when I needed it. so thank you!!!
I went to see my GP, who was very supportive and understanding. I felt better just hearing her say she would try other otpions and wouldn't give up. I also rang my rheumy team, who were lovely (as always) and my bloods haven't been great - they hadn't been picked up, and so they didn't ring - but gave me some advice with my injections as they have been causing me trouble too. After a little chat, they have decided to xray my hands to see how they are going.
Anyway, Im off to bed - so sleep tight all and I will return tomorrow x
I 've been feeling very isolated since redundancy and two of my children moved abroad. I don't know where I would be without facebook, as you say, it's good for sharing more happy thoughts. My health has declined a lot since being on benefits and I seem to be in a constant state of anxiety over all the proposed cuts which threaten what little independence I still have. It is a very testing time indeed and I am glad that a forum like this exists where it's ok to express feelings without fear of prejudice or judgement. It's good to know we are not alone. : - )
Good luck PJ with your GP. I have regularly written my rheumatologist notes. She has kept many of them in my file. I always take a note so I don't forget anything, when I go to my GP too. I was told by a good (disabled) friend that you are not filling your DLA forms out properly if you don't feel bad, because you have to be honest to yourself about your limitations, and that truth hurts bad when you realise your own difficulties. (I was a Wonderwoman too!) On the other hand, you seem to be doing a lot. Working ... Housework, so that is really a huge achievement you do all that. These are all positive things you do. The Head Physio at my hospital advocates moving/exercising hands in hot soapy water in your bathroom basin as soon as you get up to get them moving. I certainly don't mind washing up either as it does soothe! I used to go for wax hand baths at the hospital but there were only so many times I could go as such a long waiting list. That really was brilliant as it took the sting out of all my painful fingers. Reduced swelling too. As an artist I do use them a lot. I am thinking if buying one of the small hand wax baths from Amazon to get relief. In the meantime it's the good old micro wheat bag which I warm my hands on. Roll on Spring and warmer weather, this last week has given me some of the worse joint discomfort I have known. I am sure it hasn't helped you or any of us.
Neon Kitty x
morning pen.. how are you today.. hopefully the increased anti -d s will soon help,., please try to see a a counsellor or pain psychologist too ask you gp what is available,
Sometimes it justs gets too much and that applies to all of us.. my medication has stopped working and in signed off work .. life with ra can be a tough road.. I welcome messages, I gave you my contact details via the mesaging service.
This site, some of the lovely people on it and NRAS have helped me a lot.
i was sad to read your post that you felt so down, we all have moments of feeling shitty and this is a great place to fine some comfort and reassurance i think the weather recently is making us all have a few more aches and pains and feel tired . i don't know if you ever listen to music but i listen to jason muraz living in the moment it brings a smile to my face . ra is a funny old thing one moment you are wondering oh why am i taking theses meds then by the evening your exhausted and in pain and think thats why ! if you can , a nice walk listen to some music and pamper yourself in a nice warm bath .
How can you be lonely, having a loving husband by your side.
Think about this: "being diagnosed with severe RA it was a difficult time for me having to co-operate with this new horrible pain and psychologically feeling useless and this because all my life I've been full of energy, couldn't be stand without doing something at all times, then few months after, out of the blue, my partner at the time, looked at me and said that after being thinking about pros and cons, got to the conclusion that for sure wasn't prepared that in some future have to push me in a weelchair, simple knew that didn't want to it and the best thing was to permanently finish our relationship and even if I may not finish in a weelchair, which obviously I hope that day will never come, the person really didn't want to have to continue to take care of me when I have my flare ups and cannot even move.
In that time I had had to deal with my new medical condition, with an extremely active and demanding job and suddenly I had to deal with a new life style as a single woman. It was a tremendous difficult time as it was me that have had to move out.
I had to fight with myself to bring out all the strength that I could get from my mind as well my very painful body.
I won in the end, but let me tell you that I had to confront and conquest many obstacles. However, the loneliness stayed to this day.
The irony of it all is that my ex-partner is epileptic.
In fact what it makes me sad is that I know that I'm not the first person and not the last this has happened, but it is you and others that have a loving and caring partner, who give us hope that love does exist and probably ours is out there to be find.
How sad i was to read your story, .... and was just looking at my Husband of 52years with a smile because he has to do just that push me out in my wheelchair around town......,i have RA and had it for years..... my Family are a Godsent, .... Got a Family who loves us we have got everything,... take care don't give up there is always someone for everyone who will love you for ,.....YOU, xx
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) really comments on my status's. I think that I have exhausted the RA thing - you know being in pain, tiredness, the weather - I have always tried to put a brighter side to my posts, so that I dont sound too miserable.
On the other hand, you seem to be doing a lot. Working ... Housework, so that is really a huge achievement you do all that. These are all positive things you do. The Head Physio at my hospital advocates moving/exercising hands in hot soapy water in your bathroom basin as soon as you get up to get them moving. I certainly don't mind washing up either as it does soothe! I used to go for wax hand baths at the hospital but there were only so many times I could go as such a long waiting list. That really was brilliant as it took the sting out of all my painful fingers. Reduced swelling too. As an artist I do use them a lot. I am thinking if buying one of the small hand wax baths from Amazon to get relief. In the meantime it's the good old micro wheat bag which I warm my hands on. Roll on Spring and warmer weather, this last week has given me some of the worse joint discomfort I have known. I am sure it hasn't helped you or any of us. 
Scared about starting methotrexate
Scared of side effects 
First Rheumatology appointment in the morning :/ scared!!
