Felling very blue

AgentCooper

Hello everyone

Im in my late 30s and have developmental dysplasia of the hip (late diagnosis) which has led to OA in both hips and I have to get one replaced next month and the other not until (hopefully) a bit later on. Due to my condition, my legs are out of alignment and I’ve always suffered with sore knees due to the additional pressure. Recently, the pain has been a lot better but my knees have started making soft crunching noises, so I’m now incredibly afraid that I have OA there now too. I’m going to ask for a MRI to confirm it (which might take forever at the moment) but it’s just all starting to feel like too much to deal with. The hip replacements are bad and scary enough but I couldn’t face knees too. I’m really struggling mentally with all of this. Before my hips got really bad I was a regular gym goer, I eat healthily, I’m a normal weight. Now I feel very lost, very immobile, and very lonely. I feel so sad when I’m out struggling to walk and people zip past me. How does everyone else cope with depression around diagnosis and living with this? My fears for the future are immense, and I don’t think upcoming surgery is helping. Would love to talk with others and see how they cope.

Thank you

stickywicket

Hello and welcome 😀 I'm really pushed for time but just wanted to reassure you that there is life - and good life - after diagnosis. I've had both hips and knees replaced - wonderfully. Just be adaptive in your thinking. Don't be fixated on recovering 'your old life'. Move forward into a bright new one.

AgentCooper

https://community.versusarthritis.org/discussion/comment/672420#Comment_672420

Thank you. I’d be interested in hearing your surgery stories if you’re happy to share sometime. Also how you kept a positive attitude - I feel like I’m falling into a black hole if I’m honest

Aj_x

Hi AgentCooper,

First of all I would like to welcome you to the Online Community Forum. I am so pleased you have found us and wrote the post that you have. I know from personal experience admitting to someone that you are feeling down and asking for help is extremely hard but its the first step.

I am so sorry to read that you have Development Dysplasia Of The Hip, which is now affecting your knees.

Have you spoke to GP asking him to chase up about you having your MRI. I know with everything happening at the moment the hospitals are extremely busy etc but if you explain how it is making you feel and it is affecting your mental health they might be able to do something??

I am like you and am immobile and watching everyone fly past me and it does make you think why cant I do that but I have now invested in a mobility scooter and I fly past them. :-)

Do you have any support at home, family, friends etc? There are people on here that might have the same diagnosis as you that you can talk to and they might be able to give you some advice on what to do.

Also we are all friendly here so please have a look around as there might be someone you are able to speak to.

By all means come back and talk to myself having going through the knee issue and also feeling like you are but I know its hard but sometimes you have to smile and continue with your day but if you need to talk there are people around. You are never alone. Not now you have posted on here!

There is also a Forum called Lets Move which deals with exercising for all strengths. They do exercises for people that are immobile. You can sign up for a 12 week programme.

I have also attached the Versus Arthritis website and also the Helpline Phone Number if you would like to speak to someone on the phone.

Hope to hear from you soon.

AJ_x

https://www.versusarthritis.org/

0800 5200 520

AgentCooper

Thank you, AJ. That’s such a kind response.

I probably wasn’t clear, I’m sorry - I’m not immobile but I feel it. I still have both bad hips but can walk about a mile unaided but then need crutches (bad gait and pain). On the outside I present so normally, no-one knows I have problems until I start to walk any real distance. Not that I want to yell it from the rooftops but I think people see my life as very positive (which it is in a way - lovely husband, job, home, friends, outside interests) but they don’t realise the pain and - worst of all - the fear and depression behind it all. My support network are wonderful but generally don’t know what to do/say, so I often feel very lost and alone. They are aware of everything I feel, I’m not one to bottle things up.

I have no pain in my knees and my physio says my range of movement is excellent in them, but one has become increasingly noisy and I’m extremely worried. I’m seeing my hip surgeon next week before surgery so I was going to speak to him about a MRI, since they’ll be ordering checks after surgery, and go from there. I last had a MRI on my knees three years ago and they said they were absolutely fine back then. I am very proactive in managing all of this (and agreeing to surgery on my hips that terrifies me) but the low mood and fear are killing me at the moment, I just don’t know what to do with myself and I’m terrified for the future. I’m so scared of ending up in a terrible position when I’m only in my 60s/70s or even younger.

I am also sick with anxiety about my THR next month and can’t believe this is all happening to me at this point in my life. I keep trying to remind myself how much worse other people have it, but that just makes me sadder because then I think about everyone struggling and how heartbreaking that is!

AgentCooper

I also can’t believe I’ve put “felling” in the title instead of “feeling” 🤦🏼‍♀️

Lilymary

Ghastly crunchy noises can be due to air bubbles in the fluid in your joints. Several of mine do this, but it’s unrelated to my arthritis. Could it be that, do you think? Sorry to hear what a long hard road you’ve been on though. Well done working so hard to manage your conditions.

if it’s any help, everyone I know who’s had hip replacement has said it’s the best thing they ever did, even the few who had some post-op complications. One friend opted to have hers done with an epidural (she called it spinal block) so was awake during the op. She was listening to The Archers on her iPod, and was almost entirely unaware of what they were doing, completely pain free, and rather surprised when it was all over in an hour.

I can empathise with how depressed and lonely this can make you feel, my OA reared it’s ugly head very suddenly earlier this year after some general pains in my legs for a few years, so I went for having a bit of a limp but not affecting my mobility at all, and being a fit fell walker, to suddenly actually needing to walk with a stick and only being able to walk very short distances, slowly, and never being pain free. It’s tough taking all that on board, when my friends are posting pictures on social media of the fabulous adventures they get up to kayaking, cycling, fell walking, my husband going out and doing the walks we used to do together but now with his mates, and I’m nailed to the sofa. There’s even no point in going away for a weekend together, as I can’t even manage sight seeing, The last few weeks in this lovely weather I’ve found really hard, but it is what it is. I enjoy pottering in the garden as my outdoor fix, I have other hobbies and interests that keep me almost sane, but it’s not the same. Hopefully once I’ve had the steroid injections, and eventually get my new hip, I’ll get some of that back, but the thought of never getting back out there is deeply depressing, so I try not to think about it, as that’s the very worst case scenario, and it may never happen, and I’ll have wasted that time being miserable for nothing.

frogmorton

Hello @AgentCooper

It's lovely to meet you and am so glad you have found us. This forum has helped me so much over the years not least of all with the feelings of isolation and mental health issues which go along with an issue such as yours.

There is no need to feel alone - we are here for each other. I can see that your pain and mobility issues are to a large extent invisible. We get that too.

I am glad you are in line for a hip replacement so some of your problems should be solved - I had back surgery at 39 myself and felt very much like you ( I used to be the fastest mum at the school gate once😕) I was terrified of surgery - it maybe making things worse and a future - too young of maybe immobility and pain.

Luckily it was fine - the op went well and a long recovery - I worked hard with my physio and haven't looked back since.

Of course you are terrified about your knees who wouldn't be after what you've already been through? I hope you can have an MRI and get reassurance. Your knees may just be having to work very hard supporting your body due to your hips maybe? I don't know just a thought.🤞

Finally I will tell you about my youngest daughter who at 16 got leukaemia. Treated successfully with 2.5 years chemo. Unfortunately the treatment damaged her bones and she ended up at 18 having hip surgery and 19 a shoulder replacement.

Now she seemed to do ok dealing with all this (Not sure l Did though) until after it was all over when she got very very depressed she became reclusive and lost interested in life, mixing and even stopped enjoying food well anything really. She ended up having a long course of counselling and a course of antidepressants. Please do ask for help with your mental health things can and WILL be better just be brave and talk to someone about it. Outside of the family and your friends. You could ring the helpline number here. It's on this page scroll up on the right handside in blue and yellow.

Do take care

AgentCooper

Hi Lily - thanks for your lovely message and reassurances. I’m also having the spinal block rather than GA so I can recover faster. The actual op doesn’t bother me as much as the recovery, I suppose because the op is up to brilliant professionals and the recovery is up to me! I’m just worried my mood will be severely impacted by pain, lack of sleep and restrictions, and that I’ll struggle. I know that I need to be braver and more determined. Are you on the list for a new hip? I think you have a wonderful positive attitude.

Hi Frog - gosh, your daughter is a very brave girl, that amazing. How is she doing now? In terms of mental health, I have a brilliant therapist who is aware of everything and we have a ‘rehab plan’ of sessions (to go alongside my private physio who is wonderful) - it’s just up to me to make it through! I have to admit feeling under pressure, and I have nicely asked family and friends not to say things like “you’ll bounce back/you’ll smash it” as that makes me feel like I have their expectations to meet on top of everything else. I know some days will be very rough and I won’t want to cope, and that other days might be better. May I ask how you coped with those days after your surgery, and how you dealt with any pain? Well done for succeeding so well too.

Lilymary

Hi @AgentCooper, I’m so pleased to hear you are supported by a counsellor and physio, sometimes you need someone who’s one step removed from you (ie not family and close friends) who can support you without you feeling you need to reassure them or, as you say, live up to their expectations. Your friends and family obviously want the best for you and want to reassure you, without realising that their concern becomes a burden to you. But try to remember it comes from love, and be honest with them if you’re in pain or exhausted or scared. Perhaps you could ask for practical ways they can support you, even if it’s just making a cup of tea. My OH doesn’t realise what an effort it is for me to get upstairs, or on a bad day, get up to make the tea, so he doesn’t realise what a huge help he’s being if he does just small things like this for me. He sees me walking around, even working, much of the time and doesn’t understand that sometimes I’ve simply run out of fuel or the pain has finally taken its toll. He runs marathons, does huge mountain walks, so it’s hard for him to get his head round this, and other non-sufferers probably have a similar view.

On here we all understand how isolating this can feel, but I try to live in the moment and take my pleasures where I find them, rather than regretting what I’m missing, and love in hope that eventually the treatments will help me get some of it back.

frogmorton

Hi @AgentCooper

When I had my op I was a single parent to two little girls and had just met my now husband.

I coped probably because l had to. You know this yourself - we play the hand we are dealt don't we? I was careful. I took my pain killers and kept ahead of my pain (advice from the hospital) I 'overlapped' my nsaids with pain relief. I walked a little, sat a little and lay down a little. I did my physio exercises religiously. To start with I was in a lot of pain at the end of the days. Overnight things recovered, my theory was if I wasn't too bad in the morning l wasn't overdoing it!

The girls helped me a lot - putting my undies up to my knees for instance. I learned so much at that time which has helped me since (diagnosed with inflammatory arthritis - unconnected many years later) about how to manage life (easy cooking for instance) with health issues.

I returned to work part-time after 9 weeks believe it or not although to feel 100% over the op I would say took a lot longer. I was glad to get to bed at the end of the day to start with!

Now my daughter Lucy is doing so well! She has left me and gone to college in Glasgow. She is of course monitored regularly. She hated those people who called her 'brave' (I did too I can assure you as a mum of a child with cancer I was not brave at all I'd have done anything for it not to have happened) so can relate to your frustration with all the flippant naive well-meant comments you are getting.

This is the story of the support this forum gave to me - don't read it if it will upset you, but it's here if you are interested.

https://community.versusarthritis.org/discussion/41370/an-update-on-frogmorton

Lucy had a young person's physio and did her exercises before and after her surgeries just like her Mum. I am very pleased you have a physio to help you and am pretty sure you are doing yours. Don't overdo them, but I can't emphasise enough how important getting as strong as possible pre-op is.

Hang around I think this Community can really help you get through what's ahead.

Take care

stickywicket

Hello again. I’m very happy to answer any questions about my operations (assuming I can remember! – I got my first replacements back in ’81) but I’m not sure how relevant my answers will be to you.

I never felt I wouldn’t be able to cope with getting the new joints working. Maybe because I’m just arrogant. Maybe because I’m the youngest of three and always had a need to prove myself as good/strong/competent as the others. Maybe because, like frogmorton, I had two young children to look after (mine were 10 and 7 at the time) so failure wasn’t an option. Besides, one thing we arthritics are good and practised at is dealing with pain. Arthritis pain is a constant whereas post-op pain is a route to freedom.

I think it’s vital to dedicate the weeks following orthopaedic surgery to getting better. Rest and exercises are the key. Just be guided by your physio and you won’t go far wrong. I’ve always been told to ‘push into the pain’. Not through it. Just into it. And do the exercises about six times a day at first. Little and often is the key.

Here’s something my son, now a U.S. citizen, once sent me. I’ve reproduced it on here for a few people because I do agree with the sentiments:

"An old Cherokee chief was teaching his grandson about life. He explained to the child, "A fight is going on inside me. It is a terrible fight between two wolves.

One is evil - he is anger, hate, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt and ego.

The other is good - he is joy, confidence, peace, love, hope, courage, serenity, humility, kindness, unselfishness, service, benevolence, empathy, generosity, truth, compassion and faith.

This same fight is going on inside you -and inside every other person, too."

The grandson thought about this for a moment, then turned to his grandfather and asked, "Grand Father, if this fight is going on inside of me, how shall I know which wolf will win?"

The wise old chief turned to his grandson, smiled knowingly and replied, "It is simple my Son, the one that will win is the one you feed."

Just one last thing. You write “I have nicely asked family and friends not to say things like “you’ll bounce back/you’ll smash it” as that makes me feel like I have their expectations to meet on top of everything else.” I can understand that but I wonder what you would say to them if the situations were reversed. How would you encourage them? If you can work that out maybe you could tell them so that they can support you more easily.