Struggling

Moon

Hi, I'm new to this site and forum, not new to arthritis unfortunately.

I was diagnosed with ulcerative colitis 30 years ago and have had surgery for this resulting in a permanent Ileostomy. UC though does not just affect the colon it can also cause joint problems too.

I was diagnosed with UC related inflammatory arthritis over 30 years ago and more recently it's been confirmed I also have fibromyalgia and ankylosing spondylitis though these have taken many years to diagnose.

The pain I have in my neck, spine and hips can be hideous, add in the fibro pain and chronic fatigue and I'm finding it all very overwhelming. Painkillers don't help nearly enough, I take paracetamol, ibuprofen and nefopam. I'm on methotrexate injections and am awaiting a decision as to whether I can have biologics (previous history of allergic reaction to infliximab) I do gentle exercises every day and swim 3 times a week but the pain, mobility issues and utter exhaustion are becoming too much. I recognise my mental health is also poor, I do take max dose of antidepressants.

I didn't mean for this post to sound so self pitying and apologies for that but I'm wondering if anyone has any tips or advice that may help me get back on track with things

Ellen

Hi @Moon

It's lovely to meet you and to be able to welcome you to the Versus Arthritis Online community.

Reading your post I can see you have an incredible amount going on with multiple diagnoses. Ulcerative colitis, Ankylosing Spondylitis and Fibromyalgia to name a few. It is no great surprise that your mental health has been affected.

You seem to be doing all the right things taking your medication, gentle exercises and swimming. What l hope might help now is to talk to our members here and gain support here. Support from people who understand; people who might have some tips you haven't thought of and possibly sharing your own experiences and tips with them too. I hope it won't be too long before you can safely try the planned biologic.

You do not sound at all self-pitying so please don't apologise. Everyone here has their moments and you needed to get that all down so that we understand your situation.

While you wait for some of our members to come along I would like to attach a couple of links for you to take a look at:

This one might just contain something new to you:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/

and this is by two brave people:

https://www.versusarthritis.org/news/2021/october/how-does-arthritis-affect-mental-health-two-people-tell-us/

I hope you will feel at home here and look forward to seeing you post more in future.

Best wishes

Ellen.

stickywicket

I feel for you. I have known one or two people with ulcerative colitis and was once in the next hospital bed to a lady with both that and RA. A horrible combination.

I think, in your situation, I'd be looking for an appointment with a physio skilled in RA problems. It's not often I say this but maybe, if you're flaring so badly, it might be worth reining back a bit on the exercise. I've always been told to do ROM exercises even when flaring but I know that just getting to baths and back, undressing and dressing can be just too much when stuff is bad. Three times a week sounds exhausting. What do you think?

Moon

Hi stickywicket thanks for replying

I no longer have ulcerative colitis as I've had my bowel removed and have a permanent Ileostomy but I am still living with all the other manifestations of the disease. Like you say, UC and RA is a horrid combination

As to the exercise, I am under the care of a specialist physio who's expertise lies in dealing with RA, AS etc. My exercise routine is based on her advice and I follow it with her guidance and support. I swim 3 times a week, very slowly I must admit! It's something I enjoy and I do feel better in the water. I then spend 20 minutes or so in the hydrotherapy pool just relaxing in the warm water and enjoying the bubbles. The worst bit is showering and dressing afterwards, I'm always exhausted when I get home. Luckily I don't work so I'm able to rest.

Day to day life is tricky, I live with my husband, his 87 year old mother and our 23 year old daughter who has Downs Syndrome. Both are very reliant on me and my husband and I'm finding it increasingly more difficult to cope with their demands when I'm so bloody knackered and in so much pain. Poor hubby bears the brunt of it some days. The 3 swimming sessions each week are the only time hubby and I have any time to ourselves and the only break we have away from the home so I'm loath to reduce these as they are a great mental boost too.

Life just feels tough at the moment

stickywicket

Life is tough for you. No doubt about it.

I'm glad you have a skilled physio but, as everyone on here knows, arthritis loves stress. It gobbles it up and grows accordingly. You say you are maxing out on antidepressants so, how can your stress be reduced? With luck, a new biologic to which you are tolerant will be prescribed and will help somewhat. But.....

.....now, here comes the bit where you may wish to tell me to **** (insert your own swear word) and mind my own business. And I prómise I will if that's what you want.

But I keep thinking of my own parents, whom I loved dearly, and they me, and my own sons ditto, and thinking how none of us could have lived with each other as adults. It's a huge skill, talent, gift, call it what you will, which all parties would require. As my own Mum used to say "It's lovely to see you come and it's lovely to see you go."

On the one hand yo have an aged mother-in-law. On the other hand, a dependent daughter. How, on earth, does the most fit, healthy, able-bodied person cope? 

Some years ago I used to do Riding for the Disabled. Some of us had physical disabilities, some learning disabilities, some both. One, with both, was an absolutely brilliant rider. There were two adult riders whose different, ageing parents opted to get them into residential care for fear of what would happen to their sons when they themselves became too ill to care for them. I pondered this for a while. It seemed harsh. But the parents were all lovely, caring people, the men were both in excellent care homes and very happy. Soon after D went into his his Dad had a stroke. He recovered but not fully. Not enough to care for D plus his wife who was becoming less physically fit.

You can see where I'm going with this and may well not like it but I'd just ask you to consider it. With careful planning it could work out well for everyone. I am also thinking of your poor husband, watching his wife's health deteriorate in being torn in two directions. I know how Mr SW would feel. I'm sure the pair of you must have discussed options before now. Maybe t's time to do so again, maybe with the help of a counsellor. You don't have to take any hard and fast decisions, only lay possibilities on the table.

I hope this might help a little. If not, just ignore it.

Moon

Oh my goodness it's almost as though you've been sat in my house today, are you sure you're not here?!!!

I have spent the afternoon on the phone taking the first steps towards looking into assisted living and residential care for my daughter. It's an absolute minefield out there and nothing is going to happen overnight but we have set the first toe on the ladder so to speak. I have 2 adult sons who have both left home and this is the logical next step for my daughter, disability or not she also needs to become more independent and less reliant on her parents. Someone once said to me that the greatest gift you can give your children is to teach them to spread their wings and learn to fly. My boys are both settled and happy, leading busy fulfilled lives and that's what I wish for my daughter too. By the way, E rides weekly with the RDA, what a marvellous facility it is.

So thank you, I really appreciate your words and the time you've taken to reply.

stickywicket

You can relax now. I've taken down my spy cam!

Phew! I do, occasionally, stick my neck out and then wait for the guillotine to descend. I'm pleased I didn't upset or offend you.

I think you're taking steps that will be good for everyone but will, before that happens, cause more stress. What, I wonder, can be done in the interim?

My own, usual, go to solutions are exercise and distraction. You seem to be doing plenty of the former. I'm not sure where the latter would fit in. Anything that absorbs me works for me.

nicholaj

Hello you two…joining in the conversation.

Moon…you certainly do seem to have a great deal on your plate so to speak and I think the response you have had from stickywicket has been spot on. Sounds like you have found it helpful

We have a grandson with DS and autism. He is 12 years old and when my OA is playing up particularly badly my patience is stretched. So I cannot imagine the stress you are under with the physical things you are having to cope with as well as the other pressures.

My daughter and her partner have already started planning for helping their son move onto ‘independent’ living as they both recognise that it will be good for him and them if the right place is found. Currently he is in a special school which is marvellous as he really struggled in mainstream. So I think you are on the right track in looking towards your daughter moving on.

My daughter also works with parents who have dependent children with additional needs in her role in Leeds Carers. Other members of the team work with carers of elderly people. Do you have a similar organisation where you live who could perhaps offer support either with regards to your daughter or your MIL?

Very best wishes to you and stickywicket.

Moon

hi Nichola

Thanks for taking the time to reply. Yes stickywicket has been a great help and I'm very grateful for her advice.

I do feel for your daughter, having a dual diagnosis for her son must be incredibly difficult. My daughter is classed as high functioning, she went through mainstream schooling with no issues, both primary and secondary schools were excellent and she left with 3 GCSEs plus several qualifications in hospitality and catering. She is very sociable and talkative and quite outgoing. She has a fully paid part time job in a cafe now. Having said that though, she has absolutely no idea about money! She will never be able to live fully independently and will always need a lot of support. I don't know if we have an organisation like Leeds Carers here so it's definitely something I will look into.

MIL refuses to accept any help from anyone other than my husband and myself, even refusing offers from other family members. She knows I have a 'little health issue' as she calls it but doesn't have a clue just how debilitating and painful my RA and AS are. Just as she empathised with me when I was suffering with my ulcerative colitis because she had the occasional bout of irritable bowel and knew just what I was going through! Thank God I now have a stoma bag and no longer have to grit my teeth at her ill thought out remarks. She's in excellent health for an 87 year old and because I'm only a youngster (54) I'm expected to be fighting fit too. Oh how I wish I was!

I put a brave face on, I always say "I'm fine" whenever I'm asked how I am despite feeling as though I've been kicked by a horse, run over by a tractor and been out through a mangle and I carry on. But I've now realised I can't carry on much longer like this or I'm going to crack up. I need help and support too but I don't know where or who I can turn to for this. Chatting on here has been a big step for me but already I feel a little better that other people, complete strangers, have reached out and offered their help and advice and shown compassion. So thank you

stickywicket

OK, here I go again with some lessons I 've learned (often most reluctantly) over 60 years of arthritis.

1. You are not Superwoman. That role has already been cast. You have to stop pretending. The more we pretend the more others are willing to either believe it or to believe that's how we wish to be seen.

2. Everyone needs somewhere / someone where / to whom they can just be themselves and not be condemned for it. This might be a spouse or partner but it might not.

3. There is a huge chasm between being a moaning Minnie and being truthful. Re arthritis, the former will bang on incessantly and at length about me, me, me: the latter will explain, be honest about their limitations and, if others cannot / will not take up the slack, walk away from the slack rather than let it further damage them physically and emotionally. I learned, when my sons were young, that, mostly, dirt is harmless and the occasional takeaway or ready meal harms no-one. Like it or lump it can be a reasonable attitude too. 

4. I never had to live with my mother-in-law. If yours is a relatively fit 87yr old, I find myself wondering (No need to reply as it's really none of my business but just a few things you might ask yourself):

(i)Does she pitch in and help with housework - cooking, laundry, cleaning etc - and, if not why not? Sometimes we can fall, unwittingly into habits that everyone then accepts.

(ii)Why does she refer to 'your little problem'? Does she genuinely not understand? If not try explaining (See my points 1 and 3 above) Is she trying to minimalise it because either she can't deal with illness or because she feels uncomfortable being dependent on someone who is ill and in pain? If so, might it help if your husband did the explaining.

(iii) Does she have her own room where she can do her own things or are you all trying to TV programmes, radio programmes, silent times, internet times? If the latter, who chooses and why them?

5. I think most of us have discovered that it's essential to make time to really talk with our spouses / partners and allow them to really talk to us about how they are affected by our arthritis or, indeed, other things. If everyone just soldiers on pretending they are 'fine' things will get less and less fine. We start to feel shut out of each other's deepest emotions. I'm trying, and failing, to see how swimming at the same time will fulfill this as how can you talk? Could a pub lunch be incorporated?

I've said quite enough for one day. There is absolutely no need to reply but, hopefully, I might have given a few thoughts for you to ponder on.

Moon

I'm far from being superwoman! I am though, stubborn, (read pig headed!) hard working and far too independent for my own good. I always carry on going for as long as I can no matter how bad I feel and I've never been one to ask for help. I was brought up to believe that to show pain is to admit weakness. Utter rubbish I hear you say and yes I finally agree. It's taken me a long long time to finally realise I cannot do what I used to be able to do and that I have to pace myself now and do things piecemeal instead of all in one go. So instead of cleaning the house from top to bottom all in one day I now clean one room at a time and if that one room takes all day with numerous rests then so be it. Likewise if it takes me longer to prepare the dinner then we just eat a bit later than planned. I'm learning not to fret about unimportant details like that. Or as my son says "don't sweat the small stuff!" Hubby and I share the housework, he does all the heavy stuff like hoovering and mopping the floors, I dust, do the laundry, and cook. We change the beds between us. He washes up and MIL dries. Daughter puts away.

MIL has her own large room and I refuse to touch it, if it doesn't get cleaned as well as I like I now accept that's not my worry as I don't live in it. She has her own TV and sofa in there too so thankfully we don't have any arguments about who watches what. Hubby and I tend to have the lounge to ourselves as our daughter likes to spend time in her own room with her music and kindle. We also have a separate room we call the den which has a TV, sofa etc which any of us can use if we want a bit of peace and quiet or down time. I do spend time in here card making when I can and playing my cds.

As to MIL not understanding my health I do think it's partly because she just doesn't want to. I have explained it to her as has my husband and I've given her leaflets and booklets which she has read. Maybe it's also an age thing? I don't know. I just know she doesn't believe I have anything much wrong with me. She was fighting for at 54 so I should be too. Like she knows E has Downs Syndrome but doesn't have a clue what this really entails and thinks she's just a little bit slow. I call it ostrich syndrome!! Anything MIL doesn't like or doesn't want to admit to or confront she buries her head in the sand and pretends it's not happening. At 87 she's not going to change. I accept that, I don't have to like it and yes at times I could really scream and shout at her attitude but that's not going to change her, that's how she is, and at the end of the day I do love her dearly. I

Luckily hubby and I have a strong marriage and we do take time out together to talk. We'll have coffee together after our trips to the health club and just sit and natter, if I'm feeling up to it we will take a stroll around the countryside where we live. Walking hand in hand like teenagers and taking the time to enjoy each other's company and revelling in the time alone together. At our ages (54 & 62) the mad exhausting passions of our youth have mellowed delightfully into a mature and deeply loving relationship. We've been together for 30 years, raised 3 incredible children and weathered many many storms, he's seen me at my worst, helped me through 20+ operations and is my rock and my very best friend too. I've supported him in his career when he worked 16 hour days 7 days a week, been there for him when he was at rock bottom, utterly exhausted and burnt out so I like to think I've been his rock too. I do know that neither of us can imagine a life without the other in it.

On a more positive note I have had a long conversation with adult social services today and feel I have set the ball rolling for E and her future. I appreciate it's going to be a long haul and no doubt there will be ups and downs along the way all adding to my stress levels but it's a positive start and an exciting one for her.

And even better, my rheumatologist is herself phoning me tomorrow morning telling me I hope, that I have the go ahead to try adalimumab biologic treatment.

So overall I am definitely feeling a tad more positive today 😊

Moon

I'm far from being superwoman! I am though stubborn, hard working and far too independent for my own good.

I wrote a long reply but somehow managed to delete it. I will endeavour to try again so bear with me!

Brynmor

Mod Edit

Your reply ended up in moderation, for some odd reason. It’s here now, sorry for the technical hitch. 🧐

Moon

Thank you for printing it where it should be

stickywicket

Ah you have discovered the VA gremlins😉 They strike unexpectedly and squirrel away long posts. Fortunately @Brynmor is onto them😁

You seem to have everything under control and I'm very pleased for you. I hope the rheumatology appointment goes well, you can have the new biologic and it works for you with no problems. Do let us know. I also hope things will work out well for your daughter.

Just for the record "I was brought up to believe that to show pain is to admit weakness. Utter rubbish I hear you say" Oh no you don't 😁 Where I grew up, if you cried you were given something to cry about. You soon learned not to. You should have tried our school special😉

Moon

Quick update. I had a long chat with my rheumatologist this morning. Before my hospital trust will prescribe biologics I have to have an up to date and in-depth MRI of my neck, spine and sacro iliac joints. They want to see the extent of inflammation and how much spinal fusion has occurred. This has been requested but I have no idea when it will be. No point me being given a course of steroids as whilst this should help relieve the inflammation there's no point as it won't then show up on the scan. So in the meantime it's just a case of keep taking the tablets.

Beth1

I was feeling rather sorry for myself this morning - but then I read your posts and felt inspired by your strength! Thank you for sharing what you’re dealing with and the steps you’re taking. I hope things start to get better for you and that you are able to start the biological treatment asap!!

Moon

Thank you for your kind comments Beth. It's lovely to think my wittering and worriting has, amazingly inspired you! I don't think of myself as being strong, I'm just doing the best I can in a difficult situation. Yes life is tough for me at the moment and will no doubt get tougher still over the coming months with regard to accessing care for my daughter and waiting for a decision on biologics but I know there will come a day when I sit back and realise that everything is looking up. I'll be on new meds which will have worked miracles so I'll feel like a new woman and my daughter will be happy, safe and settled. It's those thoughts that get me through the darkest times.

I appreciate the time you, Nichola and stickywicket have taken to reply, you have no idea how your kind words and advice have helped so thank you all

stickywicket

I do hope you get your MRI and its results quickly. Amazingly, (well, to me) an MRI can distinguish between different types of inflammation and so predict who will benefit best from biologics. Meanwhile we will be here - well, on and off in my case.

Moon

Quick update

I had my MRI yesterday, neck, spine, sacroiliac joints and hips. Hopefully I won't have to wait too long for the results.

I spoke to my rheumatologist the other day who said that I had scored 8.9 after filling in a BASDAI chart. Any score over 4 is considered high and warrants serious medical intervention so in a funny way scoring highly could be a good thing as I'm more likely to be approved for biologics.

stickywicket

Excellent re MRI but don't get too excited😉 Round here it can be several weeks before anyone reads them.

Good news about the BASDAI chart which, I confess, I've never heard of but then I don't have AS. I do hope it means you can get on something that, hopefully, works for you.

Moon

Evening everyone

So 10 months on from my original post, some things have changed and some haven't. Mum in law is now in a home, she became quite frail very quickly over the summer months last year but add in to that bowel incontinence and the refusal to shower and dress herself it became apparent that we just could not cope any longer. We battled on for a long time but couldn't leave her in the house on her own which severely impacted all our lives. She's been in the home 4 months and is very happy settled and extremely well cared for. Plans for daughter are still ongoing. No suitable accommodation is currently available but because she was rather sidelined whilst we were looking after MIL, hubby and I are enjoying spending family time together.

Healthwise I'm a mess. I have finally been approved for biologics and am just waiting for my first delivery of injections, I'm hopeful they will make a big difference. Kidney function remains stable at 40%, not great but good enough. RA, AS and fibromyalgia are currently flaring big time, I think most of my pain and fatigue is fibro related as my muscles scream with pain at the slightest of things. I'm keeping up with my gentle exercise as suggested by the physio, I'm unable to swim at the moment because it's just too painful but I do still go to the health club and sit in the hydrotherapy pool, an added problem is the auto immune diseases have now decided it would be fun to attack my eyes and cause my optic discs to swell and my sight is affected to the extent I'm not allowed to drive.

my biggest issue right now is the pain and fatigue and disturbed sleep. I tried acupuncture as it was recommended by my consultant, I had 4 sessions and unfortunately noticed no improvement or relief of any of my symptoms, my sudden kidney failure has been put down to a rare and extreme allergic reaction to NSAIDs so I cannot ever take any of those again. Paracetamol is as much use as a chocolate fireguard, nefopam helps occasionally but isn't really that great, I've had 2 courses of prednisone recently which did ease the joint and spinal pains but obviously it's not a long term fix. Hydrotherapy I access 3 times a week along with the recommended stretching and strengthening exercises, I eat a healthy diet full of fresh fruit, veg and fish. But I feel so so fed up of constant pain, brain fog, headaches, fatigue etc etc and I am hoping beyond measure the biologics work.

Woofy

Oh my goodness. What a horrible time you are having.

I do hope you get your treatment soon. You deserve some good luck. You sound pretty awesome to have coped with all this.

Trish9556

Oh my lovely you are so brave dealing with all this. I don't think I would be so strong. Something silly that might help with sleep is a lavender sleep spray from boots. My daughter in law suggested it when I was going through a really bad spell so I tried it and it works brilliantly, even with pain. There are different ones but I have the one that you spray on your pillow as you go to bed.

It might work and I hope it does

Love n hugs

Trish xx

stickywicket

Oh dear!

Well, I'm pleased your MIL is in a residential home and thriving. No way could you have coped with incontinence. It's a shame your daughter is still waiting for something to happen. You seem to be looking on the bright side of that but, if needs be, rattle a few cages.

I'm so sorry about the eye problems. But, really, could you drive anyway? I recall the absolute horror when, one day, I approached a ring road to fine the angles were such that I couldn't turn my neck far enough to see the traffic already on it. I was used to pain but that was something else.

NSAIDS? I think approximately half the people on here, including myself, can't take them for one reason or another. No consolation to you, of course, but I guess, all in all, we're better off without them.

Acupuncture never did much for me either. Oddly, in the worst pain of my life, I found paracetamol did. The hospital kept feed ng me oramorph until I just refused it on the grounds that it did **** all until paracetamol was given. Then I got a very brief, very partial respite.

I'm afraid I've no words of wisdom. you're doing all the right things. I hope the biologics arrive, and work, soon. (Incidentally, @JessicaLizzie on this page is also desperately waiting for hers to come and work. Maybe you two could commisserate with each other.)

JessicaLizzie

Just had a read through - oh you haven't half been (and currently going) through it 😪I really hope you get the biologics soon and that they help. I never realised how much of a convoluted process it is to get the biologics. I'm the same as you in terms of paracetamol being as effective as smarties. It's really so flipping miserable being in pain and so fatigued all the time. I wish I could take it away for you (and me and everybody else on here!). Have you got help in terms of daily things such as housework etc so that what energy you do have remaining can be spent on more enjoyable things? I (very reluctantly) got help through social care and cannot describe how much it has helped me - but I see you have family who may be able to do bits and bobs for you without needing them involved. It's so admirable how you are continuing to battle on - I don't think people really truly understand what it is like living like this 24/7. If you need any advice on how to speed up social care I may of be use (through personal experience and my part jobs). I am honestly in awe of how you cope with having family, your daughter and MIL and all the health issues - I know you have no choice but not to, but I really hope you give yourself credit for it!