Staying/Getting/Doing Well – Moving goalposts or fixed target?

[Paw Prints]

Hi, this is my first post, though I have been reading the forums for some weeks. I’m probably expressing myself badly when I say that I have found reading about other people’s journeys reassuring. Finding a community of people who “get it” even when they have a wide variety of experiences and lives lived is not something I thought I would ever find.

Though people talk about getting well & there is a section Staying Well, I’m curious as to what this actually means to other people and how they manage their expectations. I noticed some people refer to being well as ‘being like themselves before they got ill’, whilst others don’t express an exact aim.

My idea of being well has changed over the years. I was first diagnosed as an 8 year old child back in the late sixties. The doctors told Mum that the voices in my head & the sudden crying bouts were because I suffered from ‘nerves’ & I was given meds to calm me. Of course such things were not discussed back then & I was told not to talk about it to anyone, not my school friends nor siblings, just Mum. For decades after my idea of being well simply meant being able to hide my illness from others.

A number of events in my life caused my illness to worsen, until some years ago I became so ill I needed to be hospitalised for my own safety. This lead to my current diagnosis of Major Depression, Anxiety & PTSD. I’m no longer in that dark place, but each day is still a battle (though I can now believe in a future). For now only my siblings & one friend know about my illness, though some things they still don’t know.
So, what does ‘being well’ mean to me, it is ever moving goalposts. If you had asked me 5 years ago would I be as well as I am now I would have thought it impossible as I couldn’t envision a future. If you had asked me last week (during one of my down periods) I would have said my progress was all an illusion & I was fooling myself that things can get better.
For now my idea of being well is being able to believe that things can change for the better, that I will one day be able to manage the everyday things like housework, caring for myself & caring for my dog & maybe, just maybe I will even be able to enjoy myself.

Paw Prints
**I took the tip to give myself time to write my post by writing on a word doc & then paste it.

[Eagle Ray]

Hello Paws,

The voice dictation feature comes with Macs, so all I have to do is make sure it's activated and press the microphone key. It's very smart and accurate but occasionally I have to do a manual override. For example, it will write Paws as "pause". Most times, though, it figures out the context and adjusts spelling as the sentence emerges.

Thank you regarding advocating for myself. I saw an occupational therapist this morning who was very helpful. She made a splint for my right arm which is the worst one. She did several tests for carpal tunnel syndrome, all which tested positive for it. She agreed that a combination of my nervous system being hyper-sensitised along with hormonal changes known to contribute to CTS and prior injury, are the likely causes. I see her again next week and will probably have a splint made for the left arm too.

I am suffering very severe depression and will talk with the GP about it tomorrow. I may get benefit from increasing the hormone medication or I can possibly try an antidepressant. Recommendations by those with expertise in perimenopausal depression tend to be different to what GPs suggest when it comes to antidepressants. Standard meds can actually be agitating with perimenopausal depression. I've done my research and will mention what I've learned to the GP. I have also emailed the hormone specialist doctor for advice. I also feel that if the nerve pain is less then my mood state will improve.

It's lovely that your younger sister's children and brother's children get along. It's a shame that your older sister's children were separated by the family rift, but it's good that things may be inclusive and perhaps healed in the future. There is something heartwarming that occurs when rifts heal. It has the effect of expanding people's hearts instead of contracting them, which is quite literally healing at a somatic level. Love is the greatest healer and I'm sure the new little arrivals like your grand nephew are like bright stars that bring joy and connection. 

It's kind of nice to have the age range amongst your grand nieces and nephews. The little ones can look up to the big ones. I imagine it's good for them to have interaction with different age ranges, and to feel part of a larger extended family.

It has been a beautiful day here today. It sounds different to how your weather has been. I hope you enjoy your cooler days before it gets warmer.

Hugs,

ER

[Paw Prints]

Hello ER,

I'm glad to hear the occupational therapist was able to provide you with something to help.  I hope the support from the splint gives you some relief.  

You are right lass that being in constant pain & having it limit or even prevent you being able to do things must have a big impact on your mood levels.  I've been keeping everything crossed today in the hope that you can get something prescribed by your GP to help.

I had one of my mega sleeps last night & I only got up at a bit past 5:30pm.  It has left me feeling blah & struggling to focus on anything.  Even this much of a post has taken me over an hour as my mind is struggling to put things into words.  

Good night lass

Paws

[Eagle Ray]

Hello dear Paws,

Please don't feel you have to try to respond with a reply when your mind is really struggling. I would say if it feels too hard after 10 minutes it's good to let your mind rest. I think I may have asked this before, but do you think your meds may be contributing to the mega sleeps as well as feeling blah when waking up? I just ask because today I was researching an antidepressant medication and reading about other people's experiences with it. Several of them said that it led them to sleep for very long periods of time. It's challenging with medications because they can really help in some ways, but can have some other adverse effects. Anyway, that might not be connected at all. I know that just depression itself can have major effects on the body. I hope you can feel better soon. I know you may be awake tonight after the big sleep.

Probably the less said about the GP visit the better. I think the fact I called two helplines afterwards sums it up. However, I did email the hormone specialist doctor yesterday and she replied last night at 10:30pm! Talk about dedication to patient care! So I try to focus on the positives. She was really helpful, and I mentioned an antidepressant that I had read is good for perimenopausal depression. She agreed it would be a good option, but to try increasing one of the hormone meds first to see if that helps. A significant portion of the depression is definitely hormonally driven and I can tell the hormone that had been fluctuating wildly has now flatlined. The depletion of that hormone can cause significant pain and inflammation in some women, so that is likely contributing to the pain I'm experiencing as well.

I had a counsellor at the Blue Knot Foundation, as well as my psychologist recently, mention the possibility of NDIS as I have been so struggling to function. I struggle asking for help, and I've always striven for independence. But I'm starting to realise how deteriorated my mental and physical health is, and really has been for a long time. I mask so much, to both myself and others. I'm also coming to terms with having a fully-fledged dissociative disorder that I've realised has always been there and is explaining now why I have struggled so much with many things throughout my life. Another alter pushed through last night and I was confronted with yet more difficult material from my inner world. But it does feel easier when they separate out from me like that. I had a lovely supportive email from my psychologist today too and each time I receive kindness, it helps.

A nice neighbour brought me some fresh fish tonight that her son caught. I cooked it and it was so yummy. It was fresh Whiting and I had it with baked sweet potato and parsnip. I will probably go to bed now and leave my dishes until the morning. I have just remembered I need to remake the bed after washing my sheets today. If you are awake tonight Paws I hope you can find some interesting things to do during the night. Take good care of yourself, you are worth it.

Big hugs,

ER

[Paw Prints]

Hello ER,

Well I did end up staying awake most of the night & I've then slept today away only getting out of bed an hour ago.  I feel much brighter & the brain is again working (well... as well as it ever does 🤣).  You needed worry lass, I don't feel any pressure that I must reply or respond to you straight away.  Yesterday was more about me trying to kick my brain into working mode & out of the fog that had settled, that was why I persisted for so long. 

You are right about my meds affecting my sleep, being on them has increased how long I need to sleep.  I had always been someone who needed only about 5 or 6 hours sleep a night, any more than 7 hours would cause me to wake with a thumping headache, but since I've been on the meds I now need 8 or 9 hours a night.  The mega sleeps kick in when I'm struggling mentally & can't face the world. As lovely as it had been catching up with everyone over the weekend it did take a lot out of me, both physically & emotionally.  Much more than I would have anticipated, but I'm hoping that as I've now woken no longer feeling so very down that will be the end of the mega sleeps for now.  Of course now I need to start trying to get my sleeping back in sync with sleeping at night.

Oh lass I'm so so sorry you had such a bad experience with your gp.  Yes do try & focus on the ones who have your back, like the hormone specialist.  How wonderful that not only did she take the time & trouble to reply to you so promptly, but she listened to what you had to say about the antidepressant & took it into consideration. 

I too don't like asking for help & want to be able to live fully independently, so I do get where you are coming from on this.  As difficult as it can be we do need to unlearn the mindset where we don't focus on putting our own needs first or where we feel like we are being a bother.  I think we both have to remind ourselves that trying to just push through things alone not only doesn't help, but can make things worse longer term.  Having the energy & space in our lives to do what we enjoy is vitally important.  I'm going to join your psych & the counsellor in saying please consider trying for NDIS support.  

Yummm... fresh whiting... with a squeeze of lemon... ok now I'm close to drooling like Woofa at the thought of food. 🐟😋

So did you follow the old traditions & do the 'just toss the top bedclothes & crawl under them', thereby leaving the making of the bed until tomorrow or did you do the 'grab a blankie & sleep on the couch', leaving the making the bed until tomorrow???  Because as we all know discovering that we forgot to make the bed after washing the sheets is a long held tradition that probably goes back to Ug in his cave.

I hope you slept well last night.

Hugs

Paws

[TrueSeeker]

Hello ER and waves to Paws

I'm really sorry that you're struggling at this moment. I can see that it's all a bit too much and it definitely sounds very draining and exhausting. Please be kind to yourself and have a bit of a break to recharge if you can.

I can understand how menopause can mess up a lot of things. I've been through it twice. One was medically induced and then couple of years later I went through a natural one. The natural one was ok, I can't take HRT but I suppose I had experience dealing with it already so it was manageable. The medically induced one was horrible. They removed all oestrogen from my body so I had lower levels than even men have. I went through horrible arthritis pain in all my joints and I also ended up with carpal tunnel in both my hands. No medication worked, I did have cortisol injection but it only lasted for a short time. I bought wrist and thumb straps in chemist and also got myself trackball mouse so I still could use the computer. All the pain eventually fully went away on its own after a year or so. I learned how not to focus on it and patiently waited for it to go away.

I know that it's not easy and it can all get very frustrating. Maybe finding something that could distract you from the pain might help like reading a book, watching a movie etc. I really hope that things will get better for you as it's a lot to deal with.

[Eagle Ray]

Dear Paws and TrueSeeker,

TrueSeeker, I just want to say how much your post helped me. I am in so much pain with the carpal tunnel syndrome. I need two hands to turn on a tap or pour the kettle. I cannot do 95% of what I need and want to do at the moment. It is so encouraging to know that your pain eventually went away. I am also finding pain medication doesn't work. It's incredible how much impact the drop in oestrogen can have isn't it. I'm so sorry you went through that horrible time, especially with the medically induced menopause. I am also finding that I've had increased joint pain and at the moment very strong nerve pain throughout my whole body. I woke with a severe migraine at 5am yesterday and it persisted at that level for 24 hours. Today I am weak and washed out and in slow recovery. I am learning I am going to have to ask for help with a lot of things. I will have to pay someone to do some tasks here, but I'm also stressed about money. I booked a trip to Melbourne in November and I now wonder how I am going to cope with it. I am also starting to think that wasn't a wise choice financially, yet it may help me with pain if I can keep things simple and gentle while there. Sometimes just being in a different environment can help shift pain signalling in the brain. Yes, I think distraction can be helpful and I'm going to try to watch some things. Reading is a bit more difficult as it is hard to hold a book. I may be able to read some things on the Kindle app on my phone by finding a way to not have to hold the phone at the same time. I'm glad I discovered the voice activation on my computer so I can type hands-free. I will do what you suggest and practice not focusing on it and being patient.

Paws, it's tricky with meds isn't it. It's the challenge of working out the benefits versus the side-effects. Sometimes we really need the benefits. I guess the sleeping for 8 to 9 hours is not necessarily a bad thing as it's about the recommended sleep time. The mega sleep sounds like your nervous system saying you just need to shut the world out for a period of time. It sounds like you have developed a pattern of recovery where the mega sleep does enable you to eventually recalibrate and function again. Like TrueSeeker was saying above, it's like having to be patient and let our body work through what it needs to do. I hope you've continued to feel better. It's taken me a long time, but I'm learning that I need to rest more than I think most days. The antidepressant I have a prescription for is an atypical newer one. It has fewer side-effects than others, and apparently no withdrawal symptoms. However, it's not on the PBS so is going to cost me a bit. I haven't started it yet as just seeing how I go with the increased hormone medication first.

With the NDIS, my thoughts are around getting support for the dissociative disorder. It's radically affected me my whole life, and I'm now seeing why everything has been so challenging. When a system emerges from covert to more overt in DID/OSDD, there is a lot of work to do as past traumatic material pushes through. I can't afford the level of regular therapy that's recommended for dealing with this. I've used up all of my mental health care plan and enhanced primary care plan for this year. I am hoping that maybe if I could get NDIS I could afford more therapy sessions to work through what's happening. My psychologist is very helpful and learning with me as I go, working flexibly with what emerges. Weekly therapy is recommended for the DID but that is not affordable. If I can get a better handle on the DID, I will experience less confusion and disorientation in daily life. It has been so hard to function and it is now making sense why that is.

With the bed clothes, I did manage to make the bed this time, but I have been known to do the blanket on the couch thing. Yes, I think it is a common tradition to discover the bed is not made just when we are about to get in it 😂

Take care, both of you, hugs, ER.

[Paw Prints]

Hello ER, wave to Trueseeker,

I remember how hard I found trying to stretch my psych sessions was when I first came out of hospital, as I couldn't afford to pay for more sessions on the DSP.  If it is possible for you to get extra paid for sessions through the NDIS lass then I'm all for you applying as quickly as you possibly can.  With everything you have on your plate, you don't need the addition of worrying about trying to afford psych sessions.

Did your hormone specialist give you any idea as to how long you will need to be on the hormone meds before you might see some improvement?  

I've spent a lot of the last two days in tears.  I had my car serviced on Friday morning & they asked if I would like it washed & I said yes thinking they would only do the outside, but they also washed the inside of all the windows.  I had been keeping the inside of my windows clean so I could safely see out, but the windows either side of the back seat I haven't cleaned deliberately as they had Woofa's nose prints on them & I haven't felt ready to lose those.  I know it probably sounds silly to be so upset by them being washed away, it has been two years, but losing that connection to him is hurting like I've just lost him all over again.  

I know I need to push past this & focus on getting things done to move forward.

Hugs

Paws

[Eagle Ray]

Hello dear Paws and wave to TrueSeeker,

I'm so sorry to hear about Woofa's nose prints being washed off the inside of the car windows. It does not sound silly at all that it is so upsetting. I know with the loss of loved ones I have not wanted certain things to be shifted or changed for a long time afterwards that reminded me of when they were there. I think it is very normal to feel that way. Do you have some other things in the house that still give you that sense of comfort in memory of him? I am cooking a late dinner tonight, but between dinner and bedtime I will light a candle for dear, beautiful Woofa and do a meditation and prayer in memory of him, and for you. Sometimes I find having a small ritual of sorts can help a bit with grief and loss and give back a sense of some agency over that feeling of being overwhelmed. If I lived near you and could do it, I would come and have a cuppa with you or take you for a coffee somewhere you would like, so you can talk about your memories of Woofa. Feel free to share anything here that helps you with Woofa 💗

No, the hormone doctor did not give a time frame because it is so individual and variable. I feel I made a sort of breakthrough today with the pain. My left arm has now worsened considerably because of relying so much on it with the right arm being largely unusable. I woke many times last night in pain and was extremely down and desperate this morning. I had forgotten there was a full day power outage today as well. It was from 7am until 6pm and I had no food left and nothing would be open here today. So I drove to a town an hour away. I stopped halfway because it is so hard holding the steering wheel. I bought a hot coffee and put my hands around it which helped with the pain. After a while, I managed to continue to the intended destination. I found a market there I had not visited before. It was very interesting with gluten and dairy free food I can eat plus lovely arts and crafts. I bought myself a necklace I really like. It was only $15 and has these sort of ocean colours and a small tree of life pendant on it. The lovely lady who made it asked me how my day was. Instead of pretending to be fine as I usually do, I explained about the strong nerve pain, but said I know it will improve. She was empathetic and encouraging. I found by the end of my day the distractions had diminished the pain signalling in my brain. While there are localised nerve compression issues, I know the most disturbing pain is neuropathic as I've had it before. I know the answer is training my brain out of the pain amplification which is automated in my system. I've been through this with severe neuropathic bladder pain and hyperacusis as well. Both took a long time to significantly improve, but I know I just have to be very patient and very gentle in the process. So I actually feel a bit better tonight and I'm coming to radical acceptance about the limitations I will likely have in the coming months but also know there are some options for helping with the pain. I know there is this visceral trauma still coming out of my system as well and I had a strong impulse to do some screaming in the car on the way home and so I did. It probably sounds extreme and would not be the right thing for everybody but it's where my system is at, processing very early trauma that is non-verbal and cannot be solved cognitively. I know the way my brain processes pain is connected with those early experiences and it's an ongoing process working through and releasing this stuff.

I hope in the coming days you will start to feel better Paws. By all means focus on other things that need doing if that is what helps to move forward, but also do not hesitate to do some nice things for yourself. Remember there is Griefline too if you would just like to have a chat with somebody (1300 845 745). Sometimes just sharing with another person can lift the load somewhat and just ease the pain a bit, even if it's just a little. 

Take care of yourself, and we are here for you 🐻🤗💕

Hugs,

ER

[Paw Prints]

Hello ER,

Thank you so much lass, you are so incredibly kind & supportive.  You lighting a candle for Woofa is such lovely thing to do & I truly appreciate it.  I'm much calmer today, it took me by surprise how much something so simple had upset me.  I went to the shop today & in my calmer frame of mind I was able to see that though the nose prints are gone, his presence is still very strong.  From the muddy footprints still on the back seat, to the avalanche of Dane Glitter (read dog hair) that covers everything from the roof down to the floor mats.  That will all stay there until I'm ready to let it go & that will probably be when I'm ready to get a new furry friend.

Woofa loved going for drives in the car, whether he got to get out somewhere & have a sniff, or if it was just a joining me on a trip to run errands.  The windows were always half down so he could get his snout out to catch all the smells, they were never fully down as I didn't trust him not to try to squeeze out if he saw something exciting.  When we were out for awhile he would signal he was ready to come home by laying down, but he was big enough he could still see out & the nose would be pressed against the glass if we passed something he really liked.  The nose would also be against the windows if I left him in the car while I popped into a shop... he would bounce back & forth across the back seat to keep an eye out each side, nose prints everywhere including occasionally the front windscreen.  In my old car, a little hatchback, people would stop & laugh because he would make the car rock from side to side.  

The necklace sounds gorgeous, I love the bluey greens that reflect the oceans many moods.  It sounds similar colour wise, to a necklace I had.  I say had, because it has been stolen by the faery folk as I can't find it anywhere, despite turning my bedroom upside down looking for it.

You are right, sometimes distractions can help us to not be fully focussed on our pain, anything that helps is a blessing in my book.  I hadn't considered that carpal tunnel syndrome might be linked to hormone changes as we go through perimenopause, but the number of women I know who have experienced it at this time just seems to keep growing.  I can add both you & trueseeker to the list of family & friends who developed it.  I had it back in my 40s, nowhere near as bad as you have it, mine was just tingling in the last 3 fingers in my left hand & I lost the ability to grip & pick things up with my right hand.  Thankfully it wasn't very painful, more annoying & it sorted itself out in just a few months, as it did for most of the women I know.  

Letting everything out by screaming sounds very therapeutic.  Sometimes we just need to get things out & if screaming helps I say do it.  Doing it in the car was wise, you don't want the neighbours coming over to see if you are ok at a time like that.  

Are you feeling any benefit from having the wrist splint or is it still too early for it to have any affect?  I can't remember how long you have had it on... brain fog 1... Paws 0.   I do remember you were going to go back to the therapist, is that this week?

Big 🐻🤗  & I'm sure Woofa is sending you healing slobbers 🐾🐾

Paws

[Eagle Ray]

Dear Paws,

I'm glad you are feeling better. I'm also glad you still have the other reminders of Woofa there. I did do a prayer and meditation for Woofa and for you too. Just like Dane Glitter, I still have Fluffy Cat's fur on many of my things and it is a comforting reminder of their beautiful presence isn't it. With Woofa's heart being as big as he was, his presence will always be with you, I'm sure. Such a beautiful furry friend 💖🐕

I loved hearing about Woofa enjoying being in the car. I can so imagine him bouncing back-and-forth, checking things out on each side of the car. It's so cute how he pressed his nose against the glass when he saw something that interested him. It made me laugh thinking of a Great Dane in a small hatchback. I then imagined a Great Dane in a Mini 🤣 You almost need a sunroof that can be fully opened so they can put their head out of the top of the car. That would look so funny - a Mini going down the street with a Great Dane looking out from the top of it 😆 

Apparently, there are oestrogen and progesterone receptors in the carpal tunnel area of the wrist. Then there are the changes in the brain as hormone levels fall in perimenopause/menopause. The form of oestrogen that declines is estradiol which leads to an increase in another type of oestrogen called oestrone. An increase in oestrone has inflammatory effects in the body associated with many of the typical presentations in menopause that many women get, such as CTS, frozen shoulder, arthritic pain, etc. For me, there is a compounding effect of neuropathic pain associated with the amplified pain signalling I get, so it can set up a chronic pain cycle. But I think the hormone meds are starting to help as I could feel a drop in inflammation yesterday, and it became a bit easier to move my hands and fingers. That is promising, and I think indicates just how strongly hormonal dysregulation is tied up with my lifelong nervous system dysregulation.

Yes, the splint has been very helpful because it minimises compression on the median nerve, especially during the night when it can get compressed while asleep. The arm feels better in the morning. I got the splint last Monday, and I am seeing the occupational therapist again this Thursday. I will get a splint for the left arm as well.

I hope it hasn't warmed up too much where you are. It has been quite cold here, actually, with a wind that just blows through you. No sign of warm weather this week, maybe next week.

Thank you to Woofa for his slobbers 🙏🐾🐾 Big hugs to you too Paws 🐻🤗

ER