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 and Croix,

Thanks so kindly Paws for looking up psychiatrists in WA. I have done some searches before. Psychiatrists cost a fair bit more but obviously can prescribe meds. If there is one who bulk bills though that could be good. I may find though that they are fully booked out which I have found with multiple psychologists who specialise in DID. I have communicated with several now who were lovely but currently not taking new clients. Some of them could recommend other practitioners, but when I contacted those people they were fully booked too with no waitlist. There is a very high demand and very few practitioners with specialist skills and experience in DID.

But the good news is I stopped the med last night and my brain is way better today. The ideation is gone while yesterday it was turning into an active plan, so I’m in a very different state now. It definitely wasn’t worth continuing with. The brain in DID is so sensitive, fragile, dynamic and complex. There are actually no meds recommended for DID. The only treatment is psychotherapy. So when people are medicated it is for comorbid things like anxiety and depression.

My current psychologist suggested that if I’m able to find other people with DID in Australia, they may know of DID friendly GPs. Fortunately there are more and more resources available online. It’s still very scary though opening up to people like doctors in real life. I have to remind myself that through perseverance in the past I have gotten somewhere. My current psychologist is kind and open to working flexibly with me/us and the idiosyncrasies of our system, so I think it’s a case of just creatively continuing to engage in that process. My mind is a lot better today so I feel more hopeful.

It really sounds like it’s become winter where you are. It’s been balmy sunny days here. The sky was a deep blue today without a cloud in sight. I looked up Melbourne and could see how cold it is there and it sounds colder again where you are. I hope you are keeping cosy. Have a good trip to big town if you manage to get there. I had planned to visit a meditation session in another town this morning but didn’t make it, as sleeping in after a rough day yesterday felt more important.

 Hope you and Croix sleep well and have a good week ahead.

Hugs,

ER

[Paw Prints]

Hello ER,

I'm so glad you are feeling less down... I will keep everything crossed that this will be followed by you feeling a bit brighter 💥 soon.  Though not going back down would still be a good option too. 😊

If you don't yet feel comfortable with the idea of talking to someone new then putting that option on the back burner is wise.  You will know when it is the right thing for you to do.  I wonder how you feel about your psych's idea of getting in touch with others with DID perhaps starting with an online support group or even an in person one?

I didn't make it into big town today... I've given myself tomorrow off from going too unless I feel differently in the morning.  So now it will be Wednesday as I must go soon having run out of one med & I know from past experience I will have issues after a few days without it.  

Today was much milder here without the freezing winds of yesterday it was a lovely 17 deg with misty rain on & off.  Not that I took any advantage of it as I spent most of it curled up on the couch dozing on & of, completely flat.  I'm feeling a bit motivated this evening though so I'm going to put a small load of washing on next so I can at least feel like I've done something useful.  

hugs

Paws

[Eagle Ray]

Thank you Paws,

I am feeling brighter, even though very tired each day. For many weeks now I have been sleeping part of the day. I think my body has been letting go of some lifelong hypervigilance and when that happens there can be a kind of muscle fatigue as the muscles and constant constrictions in the fascia (where so much trauma is stored) actually let go. I've done two recent sessions with a Bowen therapist and that is such a subtle yet powerful tool in nervous system release. So while I feel quite weak and need to sleep, it is a necessary part of the process as I'm in a kind of recovery (one that still has many stages to move through but is now moving in that direction).

I've actually spoken to quite a few new people now, including a couple of Deep Brain Orienting practitioners which is a modality that I think is extremely relevant for me and so much of the kind of trauma I hold (preverbal and precognitive). But the first person I didn't feel comfortable with and the second person was lovely but indefinitely booked out with no waitlist. And I've tried various DID specialists as well who are all booked out. But I am working through things with my current psychologist and I think it's a case of moving through different issues, one at a time. I think everything is going to be ok and will work out. And, yes, I'm happy to explore options for connecting with others with DID. I attended a group video meeting a few weeks ago that is international, but there are people involved in that group who are from Australia. So I may be able to learn of practitioners here, such as GPs, who are DID friendly or at least trauma-informed (though finding someone in my specific region will be more difficult).

I hope you are going ok today. It's sometimes a case of being resigned to what we are able to do vs what we planned, isn't it. I do hope you feel up to making it into big town tomorrow. I was wondering about services that may be able to collect prescriptions for you. I looked up Silver Chain and read that they will do that for clients, but I don't know if they operate in your area. You could make inquiries and even if they don't service your area, they may have some ideas for getting assistance with things like someone collecting and delivering prescriptions. Of course, when you feel up to it, going to big town may be an outing which is a good thing you enjoy. I know I benefit from just going out to other places. But I also get there are days when that just does not feel possible.

There was an article on Saturday on the ABC news website about highland cattle becoming popular here in WA. I thought you might like it. Apparently their woolly coat is insulating not just against the cold but against heat as well. That is kind of needed here in WA. I really like them. I'd love to have a few highland cows (or heeland coos in a Scottish accent) 😂  Apparently they have a social hierarchy and social dynamics that are quite important to them. Hmmm 🤔 I wonder how a small herd of highland cattle would go on the iceberg?

Take care and have a restful day.

Hugs,

ER

[Eagle Ray]

Sorry, that was meant to say Deep Brain Re-orienting, not Orienting (DBR). It's such an interesting new approach and I think is getting a lot closer to effectively treating very early trauma. I've found just understanding about it has helped me already and it's especially relevant to people like me who dissociate a lot. It deals with the orienting and shock responses which is where I repetitively go with flashbacks, and I find just understanding about it really helpful. It's similar to Somatic Experiencing which also makes so much sense to me. Both approaches I think learn a lot from animals and how they recover naturally from trauma. And both can be done in a gentle and titrated way that keep a person safe.

[Paw Prints]

Hello ER,

I haven't heard of DBR before & so I had to google it.  It does appear to be a fairly new form of treatment that from what I read gives me the sense that it could work wonders for some people & have the exact opposite effect for others.  I think that having the process carefully explained before commencing would be essential, but then that does apply to everything the medical profession do doesn't it.  You have been developing such a clear understanding of how different experiences affect your healing, that if you feel this might be helpful, I think it possibly could be for you.  Especially as a large part of any treatments success is on one level based on whether we feel comfortable with it & more importantly believe it could help, of course simply believing isn't a guarantee of success, but it is a good starting point.

I saw the story of the highland cattle on the late night news bulletin, they are cute despite the horns.  There are some living about a 20 minute drive from me, though along with the other animals they do get rotated from the paddock where you can see them from the road to other paddocks further out of sight.  I'm sure the property is a hobby farm as they also have 3 camels, a small herd of alpacas (possibly llamas they look alike to me), some Belted Galloway cattle, heirloom pig breeds & some totally adorable miniature goats.  It is on the way to the town where Woofa's vet was & on the way home I would sometimes stop just off the road so Woofa could visit, keeping a short distance back from the fence for everyone's safety.  He wasn't a fan of the llamas, but the camels fascinated him.

I didn't make it to big town today.  Tomorrow is the aim now.  Delivery services don't usually stretch to where I live, so many sites online when I put in my postcode come up with the message 'we do not deliver to this postcode' or if they do then the cost is astronomical unless they use Australia Post to ship things.  

hugs

Paws

[Eagle Ray]

Hello Paws,

I hope you have been able to make it to big town today. You might be there now as I'm typing this. On my visit to my version of big town last week I went to the local arts centre and saw an art exhibition. It was quite interesting - kind of a combination of textiles, craft, painting, random objects etc. I was wondering if your big town has anything like that? With the idea of Silver Chain deliveries, I was actually thinking of someone dropping your prescriptions to you in person. However, if you know you can get to big town eventually then you might not want to go to that trouble. It was just a thought if you are ever stranded and not up to getting in there yourself. I have days I know I'm not up to driving to another town.

I also have some highland cattle about 20 minutes drive from me. That's so interesting about the variety of animals on the property that you see. That's so lovely that you stopped for Woofa and let him see them. Animals of different species can be quite curious about one another. Cattle often seem very curious. They probably thought of Woofa, "Is he a mini horse, what is he?" 🤔 I remember in one of my jobs a co-worker brought in her Great Dane who was like a mini horse and it was quite comical having her in the workroom and lunchroom (which I think was technically against OHS regulations 🙈 but it was nice to have her around).

I've listened to someone with DID speak about doing DBR and she described it as less brutal than EMDR. EMDR requires identifying memories, and thoughts and beliefs associated with the memories, then targets the memory parts of the brain. DBR goes way below that level to the initial orienting and shock responses and works gently and somatically at helping the body to feel and know it's safe in present time. This is actually quite similar to Somatic Experiencing which is about releasing the body from perpetual post traumatic stress responses by completing the sense of what was needed at the time. With DBR there is very little talking, it's more about the presence of the therapist with the client as they deal with the feelings that arise. I've realised I've been doing something already like this with my system since March last year. I had spontaneous flashbacks emerging and one of my alters just stayed with me. I was going very strongly through an orienting, shock and aversion response. He just held space with me like he was a healer. It was incredibly powerful and we've gone through that several times, totally spontaneously. It's not pleasant yet it's my system's way of moving through a healing phase and gradually and safely releasing trauma. So although one of the DBR practitioners I communicated with said I shouldn't do it on myself, I think it's sort of happening anyway because we are multiple selves.

I had a lovely coastal walk yesterday with C my 9 year old part who is in her element in nature. A husky dog appeared on a rocky ridge and we suddenly thought we were in the Rocky Mountains seeing a wolf. C loved this. There turned out to be two huskies on a walk with their owners. Then coming back the car wouldn't start. This triggered T into the body who tried to problem solve it but he was really stressed because of a long running issue with the car stalling. A couple later helped us and it started eventually, which seems to be a random computer sensor issue. T then panicked last night that we may have to give up the car but can't really afford another, and this brings an impending sense of doom and hopelessness for him. We are trying to help him know he doesn't need to be so frightened and overwhelmed and we are not totally doomed. He is really still a 5 year old in an adult body feeling like he's fighting for literal survival. Later B took over wanting to do photo editing stuff late into the night which was at least calming. I was co-conscious in the background. Eventually I managed to get back into the body and put on a peaceful meditation and get us to sleep. T and B are still quite active in the background though so it's going to be a funny sort of day I think.

Hugs,

ER

[Paw Prints]

Hello ER,

It sounds like fun going walking with C.  I did chuckle at seeing a wolf, the imagination of children is lovely & it must be nice doing a walk in nature & you both enjoying it together.  Poor T it is good you were all able to hold a space for him to express himself (even if it was panicking on his behalf).  You didn't have people do that for you as a child & as distressing as it must be when one of you is struggling so badly, 'm sure it must be helpful ultimately for all of you the way you are all supporting each other.  I hope today hasn't been too much of an emotional roller coaster.  

The chemist does do home delivery, but only within the town.  I don't know anyone who could pick up scripts on my behalf.  I just looked into Silver Chain, but they only service some suburbs in Melbourne, they don't do rural.  

I did go to big town yesterday.  I am an idiot sometimes & this week I have excelled myself.  No I am not judging myself harshly, 'idiot' is being kind. When I know how a choice will turn out badly & then still do it, (running out of meds & taking too long to get more) plus not dealing with the nausea before going to town, I think it is fully justified.  Physically I was nauseated & had the shivers from withdrawal as it had been too long.  I managed the chemist & struggled with getting around Woolies because of the shaking.  I had to sit on the side of the cheese shelving (where the cooling comes from) & again on the seat in the front of the shop before heading to the car.  I didn't get everything I wanted as I had to cut it short given how I was feeling.  Then as I was driving home I managed to throw up with no warning... luckily I was just on the towns outskirts & so there was somewhere to pull over after the event.  When I got home I had some ginger ale to settle my nausea which is what I should have done in the morning well before going to town.  Once settled I was able to take my meds. I am better today, but still a bit shaky.

On the other hand I was lucky on the drive to town because as I neared a blind bend where the road is cut out of the hillside, a driver in a one tonne truck came around it on the wrong side of the road.  If I had been just a few seconds earlier we would have collided head on, thankfully as I was just before the bend I was able to brake & pull partly off the road just before the roadside dropped off & he just missed me as he pulled back to his side.  The blind bend is cut into the side of the hill & has no verge.

On a completely different note... the rain showers this week has brought the frogs out again.  It is lovely hearing them again.  

Hugs

Paws

[Eagle Ray]

Dear Paws,

That's awful having those side effects with the nausea and shivers 😞 I don't see you as an "idiot". I think you were just not feeling up to getting into big town, as sometimes that is just really hard. I also struggle sometimes to do the primary basics that I need, so I get it. I'm glad you had the ginger ale on hand. That is really quite a good antidote. I think both starting certain meds but also being without them for a bit (withdrawal) can have quite bad effects and it really can feel awful, especially those meds that do things with our brain chemicals that have a cascade of effects throughout the body. Something I wonder about is whether your doctor could give you a prescription that allows you to collect two of certain meds in a batch at a time? I just mention this because my hormone specialist doctor recently changed the way she prescribes one of the meds I get through quickly by allowing two packets of them each time I go to the pharmacy instead of one. This means I need fewer visits to the pharmacy. I don't know whether this would be possible with your meds, thus alleviating the need to get into big town as often to go to the pharmacy?

I'm so glad you didn't have a collision approaching that blind bend. That would have been quite a shock. Well done on avoiding the truck. It's incredible how some drivers just go around such bends not even mindful about which side of the road they are on. In 2020 I was travelling on a section of road called the Indian Ocean Drive north of Perth. It is notorious for accidents, including multiple fatalities. It has numerous blind bends and I was shocked how many cars did exactly what you describe - carelessly going around such bends on the wrong side of the road. I had to be really on the ball and was extra vigilant at every bend because it happened several times. As a result of that experience, I don't want to go on that route again and will probably drive an inland route in the future if I need to go north.

Yes, it was a lovely walk with C. I was reminded of a book that C read when quite young called "My Wolf My Friend". I think it was a bit of a sad story from memory but it was about a girl who takes care of a wolf. C loved stories about animals more than anything. It's funny how we still remember that book. T has been the one mostly in the body today and is still very present now, even though me (ER) is coming back online. We had a session with our psych late this morning who was so kind, supportive and present with us (primarily T who was fronting). He cried most of the session. He is so tender and vulnerable at the moment. We were supposed to go to a market in another town early tomorrow with our friend with the little dog, but we texted her 2 hours ago to say that we're just not feeling well at all. We have been feeling ill but also just so emotionally fragile. We think the friend is getting p#$%sed off with us, but it's so hard for us explaining when we're not up to something. The friend, from what she's told us, seems to have had virtually no mental or physical health issues, a very successful life in high powered careers, and is very well off. I think our reality just doesn't compute for her and I think the friendship may be on its way out. I can sense her impatience and inability to comprehend our reality, and I can't disclose the full details of it as disclosing DID still feels way too risky. So it feels a bit sad but I'm really not that well and I find it hard to be around people now who can't understand my/our boundaries and experiences. I (and T) have been so much a supporter of others, but it's often been a one way street, and when we might need some sensitivity and understanding in our direction and the person can't give it, it's sort of a wake up call that maybe the friendship is not so safe and reciprocal.

I'm so glad you are hearing the froggies 🐸 I have heard them a little here, but not a lot yet. It's wild and woolly outside at the moment.

Hugs,

ER

[Paw Prints]

Hello ER,

It is hard when people don't seem capable of understanding that not everyone has had the same life as they have had or currently do.  I don't know if you have said anything to your friend but I wonder if you could say to her that you have health issues you don't want to go into detail about, but when you have a flare up it does limit your ability to do things.  You could even add that it is hard having a disability that isn't visible.  That way you don't have to mention it is your mental health or disclose any details & it might make her a bit more understanding of you not being able to do things sometimes.  If she is someone who really can't understand other people live different lives to hers then it won't make any difference, but it might be worth trying.

It would be nice if my gp could give the double up script for my meds.  Unfortunately it wouldn't be worth doing it as one of my meds needs to have the gp ring through & get authorisation to prescribe it & how much & how often I can get it is limited.  It is silly that this one med even needs authorisation as I need 90 mg & the pills come in 30 or 60.  I can get the 60mg without authorisation, but the 30mg needs it.  It makes no sense to me.

Indian Ocean Drive sounds terrifying.  I can well understand you not wanting to travel it again.  If I want to drive to the coast I can travel south on my road which is a 20 to 30 minute trip or go the long way which is closer to an hour.  I take the long way as I will never drive the short way again.  It is sign posted as not being suitable for caravans, or large vehicles.  A dirt road cut into the hillside, all bends, always wet due to being in rainforest  & basically just one car wide with only 2 places where you can pull in against the wall to let someone pass going the other way.  So if you meet someone going the other way one of you needs to reverse to the passing place,  It really should only be one way or have those timer traffic lights to give each direction a turn without the worry of meeting cars coming the other way.

I hope the sky collies have herded your wet & woolly weather away. 🐑

Hugs

Paws

[Eagle Ray]

Hello Paws,

Thank you, yes, I have said a bit to my friend about health issues but I haven't gone into detail. My sense is that she is not overly tolerant or understanding in relation to mental health in particular. We went to a movie that had some mental health themes and she said from the outset, "I hope this isn't going to be all about mental health", whereas I was interested in the story and how the person navigated their mental health. She's also commented on finding mental health initiatives annoying (e.g. The RU OK? thing which she finds offensive). I'm realising it's hard for me on days when I'm fragile and vulnerable to be around someone who can't hold presence for fragility and vulnerability. On good days I can mask and be fine, but I'm going through so much at the moment with flashbacks and the inner workings of my internal system, that I kind of need to hunker down and self-protect, and only be around others who are sensitive and also interpersonally aware.

I'm feeling less safe with that friend now, but what I did do yesterday when I felt better later was I visited a lovely couple I know. The husband really got into photography after seeing me with my camera and we had numerous chats about it last year. So he has now bought his own gear and is just over the moon with it. He is so enjoying photographing nature, his cat, the moon etc. It's made him really happy. So it was absolutely lovely to have that conversation. I'm gradually learning more and more clearly the people I feel most comfortable with. As someone with complex trauma, I've found it hard in life to know who to trust. I've often trusted the people I shouldn't, and failed to trust the safe people who are healthy to be around, which is apparently a common pattern in c-ptsd. But I think I'm really starting to see more clearly and know by how my body responds, who is genuinely safe, lovely and warm, and who might be not so safe or good for my wellbeing to be around.

Gosh, that sounds so frustrating with your med. I guess one thing you could do is set a reminder on your phone the week before the current script is due to finish, and then you know that one day in that week you will need to go to big town, so if there is a morning where you wake up in that week where you are feeling ok you can go in. I use the reminders app on my phone all the time in order to function. With my dissociative brain I struggle to remember what happened in the last hour or what day it is, so it is a regular prompt for me.

That's frustrating that technically the ocean is only 20 to 30 minutes away, yet the road there is not particularly safe or easy to drive on. That would be such a good break for you to just go down by the ocean and breathe in the sea air. Even though it would take nearly an hour, do you think of ever driving down and having some ocean time? I'm very fortunate here that the ocean is easily accessible. I enjoy seeing the gulls, terns, pelicans, osprey etc and there is just something healing about being close to the sea.

I loved your description of the sky collies herding away the woolly weather. It reminded me of the my favourite sleep story that I listen to on the Insight Timer app. It is a guy in a lilting Irish accent describing the personalities and characteristics of all these different sheep living in a field. Like one likes to frolic in the moonlight, one likes to look at their reflection in puddles etc 🤣 The first time I cracked up laughing through much of it and it probably actually stopped me from sleeping, but made me happy. But now it is my favourite story for going off to the land of nod.

Anyway. the weather here today is on the grey side but not woolly. We've had some pretty balmy autumn weather overall. I hope you might be having some of that weather too.

Hugs,

ER