Mental health and long term conditions

Morning all,

No advice required today, I just need somewhere to vent my frustration about this flareup, family and me.

Flare up day ... (sorry I've lost count)

At the moment, it's PAIN day after day, night after night. It becomes soul destroying at times. But I have dependants and there is no choice but to keep trundling on. Sometimes I wish for a few hours of pain free rest, just enough time to allow me to repair and replenish my strength, but these are far and few between these days. I can see why individuals with long term conditions eventually suffer with depression. The feeling of being unwell just chips away at you bit by bit. It doesn't help if spouses/partners or loved ones loose their empathy and compassion for you and your illness. I had the misfortune of hearing this morning the words 'you are always in pain, even with the 20 tablets that you take'. No matter how much relations try, I don't think anyone can truly empathise with having a long term condition, unless you have one yourself. I am saying this because 2 years ago I was on the other side and honestly didn't have a clue.

Unsurprisingly the health profession places more effort in managing the physical (symptom control) than on the mental, so little time is spent at medical appointments discussing how you feel. Mention feeling down and out comes the prescription for antidepressants. And if you are lucky to be referred for counselling on the NHS it takes weeks and weeks before you are seen. By then you are definitely depressed. So 'keep calm and carry on' can fall on deaf ears in situations like these. Being optimistic and courageous in your day to day battles with this condition can be astonishingly difficult. Honestly, some days I go to work, come home, look after the kids, sort the housework and cook the meals and then crash and no one would have a clue about my diagnosis. On other days when getting out of bed is a struggle and getting dressed takes twice as long, I still go to work and do everything else and then crash, but twice as hard, still no one has a clue. Doing this 7 days a week, month after month, does eventually take its toll and is quite possibly the main cause of this flare up. But this time I am not only physically drained, but mentally exhausted. I know that this is part of the process and it will probably never go away and I will just have to learn to manage it all better, but honestly there must be easier things to learn in life like building a desk or changing electrical fuses. Why this? Why do I have to learn the life lesson of coping with an autoimmune condition? If I believed in reincarnation, you would swear I was a bad person in my former life and I'm now paying the price. I know it will plateau once the treatment is right and they can put labels to the illness. But when will that be, next week at my appointment, 3 months from now, 3 years from now ... when?

OK enough ranting. I must get the day going and get on with the daily chores. Thanks for taking the time out of your day to read my post. I take my opening lines all back. If you have been through these feelings, I would love to knowing how you coped.

Have a good day.


11 Replies

  • I feel the same, only I don't have children and I'm retired from work, so I have very little incentive to get out and about or even do the chores. My motivation is zero and my mood is very low.

    I just finished a course of steroids, during which the pain was better (though no extinguished completely) and I had energy and mental focus and this low mood improved. Once I stopped it, low mood is back.

    Like you, I suspect that at some point in the future there will be better treatment but I'm not sure I'll make it till then. Only now the medical profession realises the burden of autoimmune diseases and medication in the pipeline has been started at a time when autoimmune diseases were more of a mystery. How efficient the "new" medication would be, remains to be seen.

    Meanwhile we are bombarded each day by bad news: autoimmune diseases increase the risk to cancer, heart attacks, strokes, dementia, etc.

    I have no words of wisdom as to coping mechanism. I, like you, live each day as it comes and with a diminishing hope that things would ever improve.

    Well done for being a Mum and working whilst being so ill!

  • We have to carry on. I am a mum of three and two of my kids are autistic and I work full time. I completed a three months course of steroids and radiotherapy in January and since then I am so fatigued yet my husband does not help in anyway .

  • Hello Nicole2000,

    I definitely had the same kind of feelings after about 18 months of feeling really unwell - relentlessly, day after day, without a break. Every day was just an exercise in getting through the next minute, the next hour...a real endurance test. I found the most helpful things to be:

    1) finding some mission/purpose in life, unrelated to my illness, such as making my garden a little more wildlife friendly. This was important for me as my daughter is now grown and at Uni, and I have been on long term sickness absence from work.

    2) Always having a timetable/plan for managing my illness myself (not dependent on medical appointments), such as tinkering with my meds, going to see an OT etc

    3) Building treats into my routine every day, so that I have something to look forward to every couple of hours. This has been quite hard when I have been so physically limited, and not rich, but examples would be *bubble bath *luxury chocolate *a cup of chai tea * listening to a CD of birdsong *writing a book of family stories and anecdotes for my daughter *buying and reading humorous books from amazon for 1p!

    With your work and family responsibilities, it must be much harder for you to do any of this, but maybe there is something that might help? Remember that you need and deserve some care and time. If no-one else can see that, you'll have to provide it yourself XXX

  • I add to congratulations on achieving work and children each day. There is a great problem in the divide in treating the mind and the body separately.

    Has anyone suggested, or could you suggest, some kind of pain management service? I ask this because, for me, it's been the most helpful approach. In my case, the pain is controlled as much as possible in any case, so we work on strategies specific to my lifestyle. x

  • Nicole2000,

    I would do as you have done. Turn here for support and friendship.

    Rant away! Letting those feelings out helps. We have all been there.

    Invisible illness - invisible us? We understand how hurtful it is when we are not shown empathy and compassion the times we need it. I bet we've all experienced such times.

    I think whisperit offered great advice. I learned this too. Once I realised nearest and dearest haven't got the skills to help me and perhaps not always, the energy to offer empathy,

    I learnt to pace myself and treat myself well. I think sometimes, we get so low we forget our journey is also the journey of our loved ones. They often feel overwhelmed and helpless too.

    I attend a mindfulness class. You are perhaps too busy. So, the best thing I learned at the class is thoughts are just thoughts, they are not who we are, let them go. You have done just that, you posted here. I'm sure that made you feel better! Well done.

    Get well soon.

  • That is exactly how I feel on most days. It is like no one cares. I have not been able to get out of bed today. This means nothing has been done around the house and everyone will expect a meal whether I am in pain or not.

  • Yes I agree, pain , pain & even more pain! Nicole2000 you are very brave & stoic, so much so that probably no one realises just how painful your condition is! I'm not blaming you, unfortunately I do understand, I too have been there, rushing ,rushing, sorting out the folks but forgetting about myself! ... What I did realise after quite a while was that the more you do ... (well) ... the more you are left to do! I just don't know how you manage all that you do ... is there anyone who can help at all? Are there domestic workers that could take on some household labour? Are your family very young, I understand that we have to protect our children. Mine are grown up now, so I suppose I can 'pontificate' & advise etc just as friends & husband did to me. BUT there did come a day for me when the accumulation of more & more illnesses did stop me! Physically I could no longer trundle on & for a long while had to depend on my immediate family & a dear aunt. The cousins whom I did many favours for & those whom I had put first way before myself disappeared, even to this day. Friends that I thought were forever cleared off in front of my eyes! Hindsight is a wonderful gift, oh indeed, yet, one that I did not /do not possess. My ramblings are so confusing, I think I may have missed your point of no advice ... yet so much of what you are saying was exactly my line of thinking, I feel you are writing about part of my life story. I hear you, I understand some aspects of what you are saying & dealing with. Please slow down, look around ... who outside your wee family do you help? Do they always return your favours? Don't take those on board who have not a clue about where you are in your health. I wish I could wave a magic wand where you have at least no pain & I am sorry I can not. I hope you are not the picky perfectionist that I was /am. Sometimes today I still try to push till, "whack" the physical conditions of my autoimmune diseases & other illnesses leave me overwhelmed & unable to move!! I am not so sure if I have mechanisms for coping. Nature I find so beautiful & is always becoming. No, promise I will not start writing about nature. I have learnt more & more that life is not just about the physical illness. Body,mind & soul can not be separated, they are totally interconnected. The biggest label in all the world will not change that! Personally I have found that Giving an Illness a name does not always change the attitude of those who know you. The angst of autoimmune disease belongs solely to the sufferer!

    I am thinking of you, I wish you rest, peace & love xx Pixiewixie

  • Lovely comments to your post that hits home with us all.

    Just wanted to thank you for letting us hear your own frustrations and deep feelings of inadequacy and depression that we all suffer with chronic illness.

    I also have no label, but to be honest Pixie above was right in saying even with a label people still dont understand. If one of my friends had a chronic illness I knew nothing about I would immediately google it to find out what she had and to understand her suffering. But that is because I also have a chronic illness.

    Even if I said to many friends and family I definitely have Lupus they wouldnt seek to find out anything about it. Sadly people are too busy with their own lives to care or even be interested.

    That is why this place is such a godsend for us all!!!

    We are all heroes on here, and I hope we can learn to accept and applaud our own selves for the bravery we all show every day.

    I for one am going to try to follow the many excellent suggestions in the replies.

    All the best, xx

  • thank you for your post. right there with you! sending big hugs and warm thoughts your way!

  • Omg it's like reading my autobiography! I totally get your post and feel for you.

    Every night when I crawl into bed, long before the rest of my family have finished burning their candles, I say 'tomorrow will be better, but it rarely is. Different maybe, but rarely better!

    I am never pain free and take a cocktail of hydroxochloroquine,azathioprine, ramapril, diclofenac, gabapentin, prochlorperazine, paracetamol, tramadol and oromorph to manage the myriad of symptoms. Have dietary management for dysphasia and do isc for neurogenic bladder.

    My family are pretty good but they weren't always, and aren't always. This disease impacts on them too. Indeed, I often hear 'but you've always got pain, symptoms, or feel illl all the time'! (Maybe I moan too much, but it's how I get my self through the day sometimes - externalising my experience so that others can 'see' how I feel).

    I have coped for years but then last June I had a massive flare that took me off work for five months. I'm back now, but my day to day problems remain far worse than before June. Curiously I had depression descend at that time and it's been a battle to shake it off that I am not winning! I was referred to the depression & anxiety service in June. Waited six weeks to be seen, had six sessions (that's all you're allowed - funded by cc) then referred for counselling (funded by NHS - max 16 sessions whether you're better or not!), waited five months for availability, saw the councillor once for assessment of suitability for counselling, which was agreed I was able to have, so first appointment was three weeks later (I have to travel 28 miles to tap into this resource). I went for that first proper session and was so distraught that the councillor said I needed s full psychological assessment as some of the features of my problems may be a direct result of autoimmune activity rather than a response to a long term illness! I have to wait another five weeks for that (20/4/17, which I expect will be a nurse assessment or Psychologist who will then say I need to be seen by psychiatrist or be referred back to rheumatology for increase in treatment, or something like that!)

    Not once has my neurologist , in the 17 yrs I have been under him, ever asked about my mental state! I did tell him at my last appointment in February that I was struggling and had been given an appointment for counselling. He said 'that's interesting ' and them moved on! I don't know why he thought it was interesting and he said nothing else about it. When I saw the rheumatologist in March and told her how I was being affected mentally, she said, 'oh that's not unusual , get it treated'. She then moved on!

    When I took the high dose steroids that the rheumatologist then put me in for joint swelling and foot bone subluxation, I had a dramatic lifting of my mental health symptoms, which remain much better at the moment! So I am going to go to this adult mental health assessment on 20th and try to get to speak to ,or be referred to, someone who can identify if increased immunosuppressant therapy is the treatment that will help. I don't want antidepressants or antipsychotics for other weird symptoms if inflammation on the brain is the cause!!!!!

    I am astounded that my mental health has been so neglected when I have an autoimmune condition that is renowned for being associated with mental health problems, including depression and psychosis!!! Nothing short of neglect and a failure in duty of care!

    (Come on government and NHS- these heavy duty neurology and rheumatology appointments should go hand in hand with a psychological assessment at the same time, in the same building!)

    If you can manage the mental health of patients, they are far more likely to be able to manage their autoimmune condition just that nit better, surely! (I have just written to my MP about this, and have had an initial response saying he will get back to me very soon as he would like to discuss my experiences and ideas further. It's at least a small amount of pressure I can put on the system to advocate change! I would recommend writing to your own MP with your views peeps!)

    I do hope you get a let up in your symptoms soon, and yes every day can bring a multitude of challenges that you can't predict from day to day. And yes, I think it's no wonder your mental health is suffering, so bless you. I totally feel for you. Big hugs while you try and muddle through your flare. It's a cruel disease that does indeed feel like s trial and punishment.

    You rant away as much as you need to, I just did!!! 😂😂😂

  • Thanks all for your words of wisdom. I didn't really expect to get any replies, so thank you for using your precious time to respond. Flare up still going on and feeing pretty low in mood this morning. I have just added another venting post.

    Have a good day.

    Nicole2000 😊

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