Blue's terrible, horrible, no good, very bad day (life viewed through the lens of depression)

[Clues_Of_Blue]

Some of you are aware of my existence by now, but for those who aren't, I'm fairly new to this forum. I've been stumbling my way along with depression for somewhere around seven years. It was triggered by a life event and exacerbated by circumstances since then, which I've done my best to eliminate where possible. About a year ago I changed track with that and made the huge decision to end the relationship I was in. Rough though that was, I finally started to see a bit of progress. I've still had a fight on my hands, to stay afloat and get control of my time and money and my peace of mind, all of which were tied up for a long time in untangling my finances from those of my ex (not his fault, the bank made it really damn hard, and my job and my own state of mind weren't helping).

Now I've started enjoying things again, and am not always instantly down when I'm on my own. I was once a (deliberately) solitary creature who enjoyed my own company and learning everything I could, so it's good to be more like that again. The depression's always there, lurking in the background, but I sometimes go a few weeks at a time without any prolonged episodes. Long enough to start feeling like I'm healing or that my emotions have some concept of cause and effect again. Then down I slam again, sometimes for a day or two, other times for weeks, and it feels like I've made no progress at all. In these periods my mind and my emotions are constantly at war, particularly when I'm alone and/or it's quiet. My mind is calm for the most part, and well aware I'm strong and capable and have strategies and I actively work on those in spite of the depression. My emotions, on the other hand, are running about with flags chock full of negative messages and even though I know it's not (or even close) I feel like everything is collapsing, that I can't deal with it and I just want everything to stop. That's where I'm at, today.

I do have an amazing partner now, who is extremely supportive, and has helped me immensely. My current problem is that I need my friends and family, too. I so rarely have time that isn't ruined by unsociable work hours and also the energy and will to socialise, but my friends are seldom available when I do. In those times I know it may be weeks or months before I can see them again, and I miss them, and that's mostly when I crash again these days. Dunno how to fix that yet, but I need to vent, and here I am. Getting better but having a really crap day.

[Clues_Of_Blue]

Hey ER,

As always, I appreciate your understanding. I've had to do a lot of withdrawing lately. I've continued to struggle with extreme fatigue, taking vitamins and getting my sun, etc. is doing a whole lot of nothing to alleviate it at this point. Whatever is going on, it's very much a physical thing not a mental one, so I've finally relented and booked in to see a doctor. Who knows, they might even do something vaguely useful about it. Fingers crossed, I guess, I've done all I can on my own, and it ain't working.

Sorry to hear you've been through a rough patch. Hormones can really make things harder, can't they? I understand dissociating to deal with trauma, I have plenty of experience with derealisation and avoidance tactics that are moderately dissociative. I haven't heard of Other Specified Dissociative Disorder, though I know a bit about DID and the sort of extreme trauma that brings that about. I can imagine seeing your symptoms lining up with something so complex and severe would be pretty confronting, though I hope the knowledge is giving you some comfort and help around the healing you need.

I hear you, sort of okay and surviving is where I'm at too. We're strong, we've got this. Much peace and rest to you, and hugs,

Blue.

[Eagle Ray]

Dear Blue,

That’s no good about the fatigue. Yes, seeing the doctor is a good idea. I imagine they will run some blood tests and look at a few parameters to see if they can identify anything causing it. I had a thing like that with my liver condition where I just knew something wasn’t right physiologically but it took nearly 5 years to get a doctor to do further testing that identified what was wrong. So it can be worth trying more than one doctor, but hopefully your regular GP will be sufficient and do some investigations and lateral thinking. I do hope you can get a sense of things soon and start to feel better, to have the info at hand that gives you a way forward to address the fatigue.

I’m back on hormone meds now and they are really helping with the anxiety/depression. I’m on a low dose to avoid more histamine reactions. I’m presenting with the symptoms of OSDD with one main alter and several others appearing at times. Looking back I can see I was always structurally dissociated but it’s like it’s all coming out now in terms of separate identities. Each alter has a specific role. The main one holds trauma that I can’t. It seems I may have amnesia around specific trauma instances that he is able to acknowledge and my body and intuition feel are real but my conscious mind can’t see. This is on top of the trauma I do consciously remember. It’s been weird and confronting to say the least. But I’m fortunate that the alters are mostly highly supportive and cooperative. I think the trauma processing I’ve done with my psych has helped with this and it may even be why the alters feel safe now to come out as it is quite common for them to remain hidden to protect the fronting self. They are also co-conscious with me so there are no blackouts where they take over. I remain me and in charge of myself but they are actors in my world, which is why it’s more OSDD than DID. At times, D, the main one, sees through my eyes and it’s like he’s merged with me, but I’m still me. I’m not actually diagnosed at this point but I’ve scored in the OSDD range each time I’ve done the questionnaire for it. I said to my psych I’m not sure I want a formal diagnosis on paper because there is a lot of stigma and I’ve read other people with it saying you can be better off not having it in your medical record. Also, it’s fairly functional at the moment so it may not meet the formal diagnostic criteria of causing significant distress.

I watched an interesting interview with a woman the other day who has DID and autism together. It’s on the CATD YouTube channel which has many informative videos on DID and OSDD. It was really interesting hearing how she navigates the autism and DID together. She’s also diagnosed with fibromyalgia which I am too, so I could relate to the whole picture she described. Anyway, it’s all been very interesting 🤔 

I hope hubby and Mr Feisty can provide a bit of cheer amongst the challenges of fatigue. It’s often those connections that keep us going isn’t it. I’m realising how important connections are. I agree with you - we are strong and we got this.

Take care Blue and wishing you peace, rest and supportive hugs too,

ER

[Clues_Of_Blue]

Hey ER,

No, it's not good. I've seen the doctor and done blood tests. He said a couple of days for results to come back, but helpfully I couldn't book in with him again for a full week, so I'm just sitting around, stewing in my juices waiting for any kind of answer. He was honestly pretty dismissive, minimising the significance of the fatigue, which honestly is about what I expected. But I guess I don't have to like the man, I'm there for the tests, and they don't come with a bias. In so saying, I don't have a regular GP for precisely this reason - so far I've found the kind/respectful ones haven't been fantastic at the doctoring part, and the ones that seem kind of competent are so arrogant they are nigh impossible to deal with, you waste all your time in the appointment navigating their ego to get any treatment. Sadly your tale about taking 5 years to get a doctor to look close enough to actually find your illness is a common one among people with chronic health conditions. Imagine what could get done if they put their self-aggrandisement down for five minutes!

Glad to hear the hormone meds are helping, though I gather you had trouble with histamine on account of them. Hopefully the low dose balances your needs properly. The OSDD sounds pretty intense, I can imagine you have a lot to process right now with this information coming to light. I'm sensing some relief from you even so, at having some answers and a way to understand what's happening and why. Is it possible for the dissociated identities to integrate eventually into a whole self? That's something I don't actually know, and that you've probably wondered about and looked into yourself. I totally understand you being hesitant to get a formal diagnosis, even an autism diagnosis can be a real double-edged sword that can be used to undermine legal rights, I can only imagine how a diagnosis like OSDD could be ill used. I hope that your psych has the compassion and wisdom to help you navigate it without putting it on your record without your agreement. For what it's worth, I'm really proud of you for the curiosity and self-compassion you're approaching this information with, even with the acknowledgement that this must surely be really hard to swallow on top of everything else.

I'm glad you have information sources from lived experience that can help you understand all of it together with autism, which is quite the handful on its own. Fibromyalgia too, huh? I know a couple of fellow autists with it, that's no fun to deal with, either. On the physical side of things I seem to be luckier than most autistic people as far as comorbidities go, as far as I know, and at least the asthma/hayfever combo is manageable. I am grateful for that. I'm fairly convinced the acuteness of my current fatigue will have a straightforward answer like a deficiency in some vitamin or other, as has been the case in the past. Fingers crossed. 

My little family are a font of love and healthy connection, so yeah, they keep me going. Connections really are so important. Yep, we're strong - and we are allowed vulnerability within that.

Strengthening hugs for you,

Blue.

[Eagle Ray]

Dear Blue,

I so understand regarding trying to find a good GP. It can be fine for straightforward things that have an easy solution. But it often seems the more complex issues are either treated dismissively or, as you say, you have to work hard to get through to the doctor to get your needs met. I have had to return time and time again to my own research and go beyond GPs to specific specialists, a naturopath etc. The naturopath has been the most thorough and evidence-based out of all of them, despite his insights and progress with me being totally dismissed and ignored by several doctors when I’ve tried to let them know the good results I’ve had (evidenced by several advanced microbiome tests and drastically improved liver results). I’ve had two doctors now say they won’t look at the microbiome results because in their words, “they wouldn’t be able to understand them”. I’m not a doctor and I can understand them! I have reached a point though that I’m beyond even allowing myself to be upset by doctors anymore. I expect them to not be able to help me then keep researching myself to find answers. Then when someone does help I celebrate the small wins. The hormone specialist doctor I see is at least good to communicate with. All I can say Blue is keep exploring and persist in looking into things, and by all means get second and third opinions if you aren’t getting anywhere with the current doctor. There are certainly many possibilities for fatigue so I guess just see how the blood tests go and then review the situation from there. I know it must feel frustrating and disheartening at times 😞

I wish I could sound cheery but I’m not. I had my first session of EMDR on Monday. At the time it seemed to work and I felt quite good and positive for a few hours after. But then everything began to unravel, initially feeling numb and not able to experience positive or negative emotions, then distress bursting through, then unremitting distress today. This is apparently something that can happen with EMDR. It can break down dissociative barriers that were in place to protect against traumatic experiences and memories. Neither myself nor my therapist predicted just how much the barriers coming down would impact me. I’ve been in communication with her today and called The Blue Knot Foundation and Lifeline. I’m just lying in bed now trying to feel a bit better after severe emotional flooding today.

A lot of people have the autism/fibromyalgia mix. I have met several. There is something going on there. People with fibromyalgia often have very similar sensory sensitivities. I’ve met several women with fibromyalgia who have a child with autism. The overlap of complex ptsd and fibromyalgia is extremely common, as is the complex trauma and chronic fatigue link. For me all that stuff is intertwined.

I’m so glad you have your little family Blue. It is a good foundation that I imagine helps stabilise life’s challenges and a very meaningful source of comfort. Wishing you all a peaceful evening and good rest of the week. Big hugs,

ER

[Eagle Ray]

Hi again Blue,

I just realised I didn’t answer your question about the integration of dissociated identities. Some people do achieve that. Some therapists also have that as a goal. From what I’ve been learning, quite a few progressive and insightful therapists these days realise that integration/fusion may not be ideal for some people who operate best as a collective/system/team. The goal becomes about having a healthy relationship among the identities in the system and working with them, rather than integrating them into a single whole. Some people will never integrate as it’s so core to their survival that they exist in parts/alters and even a strength with some advantages. For some with DID the goal is to get past amnesia between the parts so they can be co-conscious but not dissolve the parts themselves. In some cases some amnesia remains as a protective mechanism (e.g. with a part holding particular trauma that other parts such as the host can’t handle). It’s quite complex and no two systems will be the same.

The EMDR has strangely affected my currently two active parts. I can visibly see how they carry different aspects of myself. One was quite adversely affected by emotional distress by the EMDR before I felt it. My other part was numbed out by it but trying to find ways to stay connected and quite pro-active in doing that. Myself and that part were working to support the most distressed part. Then today the distress caught up with me. I explained to my psychologist today I have to take these parts into consideration doing something like EMDR. It’s like any process has to include them, how they will be impacted and how that affects me. They are my support team and I’m their support too. I know that probably sounds weird but that’s my world now. It’s a lot less lonely but also more complex in some ways. I had unnamed parts before that just weren’t differentiated, but my psyche has just made my lack of integration more distinct now. It’s actually helpful in a way that they have become so clear and I think it might actually be a process of trauma healing that had to happen that way in my case.

I hope that sort of explains things.

Hugs,

ER

[Clues_Of_Blue]

ER, I don't have words to answer those messages right now. I have the worst possible news a parent can have, and I can hardly think or even breathe. Our perfect boy is gone. By all accounts he was so healthy and happy, eating and pooping and playing with all the energy of a fledgeling. He died so suddenly and I don't really understand why, or if there was anything we could have done. I just know our angel is gone, and all the colour has drained out of our world. Everything feels wrong.

[Eagle Ray]

Dear Blue,

I am so, so sorry to hear of the loss of your beautiful boy. It would be an enormous shock. I imagine you will feel numb for a while before you can even begin to process what’s happened. I can only send you the warmest virtual hug and kindest support.

I know it will be impossible to even think much right now, but I think knowing he went quickly and didn’t suffer and seemed happy and well beforehand means he had a good life without suffering at the end. He was so loved and cared for. I don’t know if this will help, but my mum died suddenly when I was living with her at the end of her life and I actually continued to say things like good night to her and it did actually help. It was like acknowledging her in spirit and made things seem less weird from the sudden shock, like it wasn’t quite such a discontinuity between life and death. Of course, do whatever feels most right for you.

Feel free to debrief here as you process your grief. I know it will be a really hard time for you and hubby.

Take care and sending you much love and support,

ER

[Clues_Of_Blue]

Probably won't be talking much at all for quite a while, it all feels too hard, but I do want to thank you for your support. We do talk to him, and even still feed him. I'd only just made a new batch of food for him. It's too much to just stop doing all we do for him. In time, but not now, we don't know how to exist without taking care of our son.

[Eagle Ray]

Dear Blue,

Yes, I totally understand talking being hard. I also really get continuing to feed him. It’s so important to do whatever feels right and most helpful to you and hubby. Take great care and go gently xx 

[Clues_Of_Blue]

Hey ER,

I'm finding nothing is really getting easier since Mr Feisty died. The ol' depression has been trying to get its claws in, and it's so easy to isolate when that starts to happen, even without friends getting sick with the change of season and cancelling plans, and the ongoing struggle to get out around doing the have-to stuff that is happening even slower and with more difficulty than it already was. Hubby has a lot of medical stuff upcoming that is crowding out much-needed opportunities to connect with friends or manage the household. Trying not to disappear into that whirlpool that's doing its best to pull us down.

Finding too that I am struggling to hold a sense of identity without our son. On one hand, I know who I am and there are plenty of things about me that make me who I am. On the other, what in that is greater than being a bird parent? It's such a huge part of what I am, and a huge part of hubby. There is such an aching emptiness without our little boy, and the grief for Sir Pecks has risen once again alongside that. I see such melodrama in what I have written, but it's how I feel. Our little birds are everything. 

Kind thoughts to you, I hope you are holding up better than I,

Blue.