Moving forward
Little moments of joy
Searching for lights in the darkness
Health update
Cardiology
Using a self care pet
Finch self care pet
Weekly update
Hi folks
Not much has really happened this week health-wise. Just a slight wobble with my old lady, Maud. She's a cat and my zen master. She has taught me much about love, being chill, patience, just existing without a constant need for validation or approval. She's been dealing with a thyroid issue for a few years, for which, medication hasn't worked. Sometimes she stops eating. Luckily catnip works well for her and helps her appetite.
As for me, I'm still waiting for the pelvic pain specialist who I'm pretty sure at this point is rarer than a unicorn. I've been waiting for, hmmm let's think, 4 years.... My referral keeps getting rejected. It's taken so long that I have now asked to be referred back to my gynaecologist. I feel at a loss and often it's this, mixed with a lack of MH support that drives me to the brink.
I don't even know where to start with my mental health. The local MH hospital keep telling me that I don't want help every time I ask for help. It often feels like they don't want to help. Or maybe they just don't have the services and staff to deal with anything beyond absolute crisis.
I've not done much art lately but know it will be there when I need it.
I've been getting back into my plant knowledge and herbalism. Life has gotten expensive in the UK and good food and *(herbal) medicine is now out of budget. My plan is to make my own pain salve again* using CBD.
I'm not a qualified herbalist so can't give a full recipe but will put down the recipe for the standard massage bar, to which you can add your own blend of herbs and essential oils.
Much love
M x
*Edited 02:43, 19/02/2026
Why am I not "better" yet?
This is a question that often floods my mind. And is often a question we get from others.
But it depends on whose idea of better we are going by. Mine, or yours. And that depends on the goal of healing. I spoke a little last week about receiving a diagnosis of Borderline personality disorder (BPD) and how crushing this was for me. Over the years I have used psychology, as well as Zen Buddhist concepts, to help me to let go of some of the shame and guilt I've felt. In all honesty I think the BPD diagnosis was one more thing I didn't need on top of cancer. Speaking with nurses and other patients since cancer, my reaction seems fairly normal. I remember the oncologist telling me they'd be worried if I wasn't scared, because being scared about cancer, about possibly dying, is totally normal.
I do not believe healing to be linear. It ebbs and flows. Sometimes we see no progress, sometimes the progress is slow, or more obvious with it's rewards. I've found using a self-care app for keeping on top of this really helpful. The one I use has journal prompts, breathing exercises, mental health quiz etc. It's really helped to learn different techniques for healing through the app. I choose to pay for the premium service as it keeps me engaged in my self-care when I'm not able to engage in therapy. For me self-care is not about bubble baths and candles, although they are a nice treat, they aren't the mainstay of my routine. For me, self care is about looking after myself: taking my medication, taking time to sit with my feelings, doing a breathing exercise daily so that it becomes muscle memory.
In the past I was able to do more, go places, see people, socialise. Now I find these things so much harder. My energy runs out faster, pain disturbs my sleeping and I am often awake in the night, only to need a nap during the day. I'm awake no less hours, but I'm doing the day in two separate shifts. This can be difficult while visiting folks. The travel itself is exhausting, every jolt adding to my pain level, my body keeping track of each bump or sudden shift. I am more sensitive to bright lights, loud noises and smells, leading to sensory overload. This can really zap my energy and leave me feeling tired and in pain from head to toe. I'd forgotten quite how draining it was until doing it fairly recently. I don't do it often because my body isn't up to it. I am slowly learning to make other arrangements. I am slowly learning to say "no". And that I don't need an explanation as to why I can't, or why sometimes I can. Pain is unpredictable. I am slowly learning to change how I experience my pain by slowing down and succumbing to it, which sounds bleak but isn't. Personally I have found it liberating as I am listening to my body more and making changes for it's needs. This can be conflicting to other people's needs and opinion of me. But they don't have to live in my body, with the exhaustion that comes from chronic illness, and from cancer. I have had to learn to live at the pace of my body, and I've had to accept that that fluctuates constantly. Going against my body just causes unnecessary resistance, leading to pain and exhaustion.
I set very high goals. Only to feel like I have failed. This tendency toward perfectionism is something I have been trying to let go of, but like many things in life it has been slow and arduous. A great chapter in Jeffrey Marsh's book "Take your own advice" talks of this very subject and helps the reader to forgive themselves for these habits rather than beating themselves up. This act of self kindness can change the whole narrative. They often repeat the sentence "you were doing the best you could, with the information you had at the time" Jeffrey Marsh (2023). Learning what my body needed after cancer was a difficult process. And I know I am still in that process. In all honesty, before I got cancer, I don't think I ever asked myself what I truly needed, what my body truly needed. I had been living in survival mode for years. I had been living with undiagnosed endometriosis for who knows how long, each month my body wearing down, with no proper place to rest between jobs. I had no idea how to take care of myself. I also had a tendency to sort other people's problems while ignoring my own. I was ill, tired and hopeless. Moving to a house for the sake of my health gave me a place to rest. Rest is still something I am working on.
I believe that it's perfectly acceptable to need to do things differently, just because we notice that we need to. There doesn't need to be a life altering diagnosis for us to think about what our body needs to thrive. And there are so many different ways to exist. Who gets to say what is normal or acceptable?
I have accepted that my health might not improve but my experience of it can. By making space for my self and tending my needs, I can have a less painful experience. When I ignore my body, it doesn't stop, it just gets louder. Until I have to stop and tend to it and nothing else. This halts any progress and mentally puts me back months. I think society puts pressure on us to do things a certain way. But having started to experiment with different ways to heal or deal with pain, I have found that it's very personal. I think it's one of the reasons why I loved Jeffrey's book so much, as they teach the reader to TRUST THEIR INTUITION. Not necessarily an easy task.
I think it's easy to assume we are doing a bad job and blame ourselves for "not doing well enough", "not being well enough". I am definitely one of these people. I have worked so hard at it, and felt like I got nowhere. Then I tried not trying and that made even less progress. Maybe trying to make progress is what is stopping me from healing. Maybe I am looking at the wrong thing entirely? And it occurs to me now that maybe for me to heal, personally, I must first get rid of this notion that there is progress.
What if we accepted our half baked selves, slightly messy and irregular shaped. Our humanness. Our Mistakes!
Would this make it easier to feel "healed"?
with Love Mx
Book reference
Jeffrey Marsh "Take your own advice" (2023)
Jeffrey Marsh | Trusted Mental Health Expert for High-Functioning Growth & Healing
Finding love for myself
Finding love for myself has been one of the hardest journeys I have ever knowingly taken. I know healing may or may not take the rest of my life. I no longer cling to hope that I will accomplish unconditional self-love. But I try to engage with the healing process in any way that I can. The small moments of joy and calm are worth the effort. The real task is loving myself when I feel I have failed, messed up or am overwhelmed by emotion.
My mind is often a raging sea of negative thoughts. My journey trying to heal, trying to love myself started when a friend pointed out that some of my mental health issues might be due to trauma. At first I didn't even want to entertain the thought. It took me a while to start accepting it, and I don't think I really accepted it until I was diagnosed with Borderline Personality Disorder and ADHD around the same time. (Sept-Dec 2021)
I had just been diagnosed with breast cancer(BC) (E+,HER"+) (Sept 2021). I completely broke into pieces and had a meltdown in the oncologists office. Life had just started getting good, after years of dealing with my endometriosis(EMS). But the last month before my BC diagnosis I had felt like something was off. I couldn't put my finger on it but I wanted to stop the treatment. And then I found the lump. I felt guilty. I felt like it was my fault for doing such a risky treatment for my EMS. My mind went to a very, very dark place.
My breast cancer nurse softly guided me to the mental health team. I don't really remember what happened that day. The staff knew me but I couldn't place them. The room wouldn't stop spinning. My head fuzzy. I honestly don't remember if it was this same day that I saw the psychiatrist. Or whether they gave me another appointment. But I do remember walking into that appointment with said psychiatrist thinking I was going to a therapy session with a counsellor. The psychiatrist had made up their mind pretty quickly about a diagnosis of borderline personality disorder(BPD). I was crushed. This felt like the worst possible outcome. I didn't even realise I was being assessed.
I didn't want to accept it. I still don't. Accepting this part of me is so very difficult. But necessary to heal. The more I reject it. The more I mess up.
Trying to find the flow
Hi and welcome.
If I'm honest I've not known how to start this blog. What am I even writing about? I have felt that I want to complete the patient experience section first, so that it's there as a reference. However, I think it's best not to assume people have read it first, or to remember.
I think talking about my experience of endometriosis and breast cancer might be of use to someone. But my brain is drawing up blanks. I could give you a play by play of what happened, surgery, chemo, radio-therapy.... but details and emotions seem to be missing from the account. Not because I wasn't emotional! I was an emotional wreck. But because a lot of my memory of my experiences from those few years is blank, void, gone from the memory bank. So how do I talk about it? Do I even want to drag up the past when my brain has so lovingly kept me safe from the pain of that experience? My mind wavers between yes, maybe and no. It was my therapist who mentioned that maybe it was my brains way of protecting me. Maybe in time the memories will come back. Maybe they won't.
So where am I at now?
If I'm honest I feel somewhat lost on that one too. Healing from breast cancer, still. Not knowing what is the way forward but knowing that my interest in alternative healing is something I want to investigate. I think if my mind and body are pulling me in a certain direction, I should follow. Listening to my body wasn't easy and I have a suspicion that my endometriosis may have gotten worse recently. Although I'm completely at a loss as to how to move forward. My GYN is not able to operate on the thoracic endo. I respect him for being honest.
So how do I move forward. And in which direction. Is there an approach that can alleviate my pain? And what does this approach look like?
Western medicine saved my life.
But, it has also made me sick.
I was put on codeine at the age of 22. and I have been on and off of it ever since. I am tired of using a painkiller that does nothing for my pain, but keeps me addicted. I will be honest that I have used Cannabis for my endo since the age of 16. It's the only painkiller that has ever erased my pain completely.
I'm in the process of coming off he codeine again. This time I hope it sticks. I have asked for help from the musculoskeletal team to help me with my pain, pacing and day to day tasks. I'm still healing from trauma and trying to process everything that has happened.
I'm learning to accept myself. To turn the self abuse into love and be my own protector. It's probably one of the hardest things I'll ever do.
I think at this time I need guidance, and that engaging in therapy again would be helpful. I would also like to investigate more alternative therapies.
I've come to realise that healing isn't linear. It seems to go in spirals. Each time taking you back to the start of the trauma. Each time gaining more knowledge.
Each time I notice the fear building in my body, I remind myself, "drop your shoulders", "breathe into your body", "focus on the breathe".
So maybe at this time, everything is a little unknown. But that's okay. I can only go at the pace of what my body allows, and the pace of the medical staff helping me. At the moment, it's pretty slow. But hopefully as I start the pain exercises I can build some more trust in my body. And start to be more present.
Much Love
Mx
*edit: I should mention, for clarity. Yesterday was spent in A&E, due to a strange lump on my leg. I am on medication that can cause clots so I calmly called 999 and got through to the ambulance service who told me to make my way to A&E. I made sure to get a lift to the hospital. The doctor ran a D-dimer test and everything came back normal. In retrospect, it looks like a weird bruise, another I do not remember getting. But probably nothing serious. I am, however, glad that I checked it out.
I believe there is a time and a place for hospital treatment. When it comes to life saving care they are excellent. However, when it comes to living with long term illness, it has often failed me. I have lived with Endometriosis long enough that I am willing to look for other options for care. This will be my journey discovering what works for me, and what doesn't.
Happy New Year
Wishing you all a very happy new year as we move into 2026.
Love M x
My Patient Experience
Blog : Medical definitions and symptoms
Definitions for adenomyosis and endometriosis from the Endometriosis summit e-book -
https://theendometriosissummit.com/wp-content/uploads/2023/10/Endo-Definitions.pdf
Definitions for ADHD and BPD from the DSM-V- https://www.academia.edu/87962793/DSM_5_TR_English_?auto=download
Breast cancer definition references:
Breast cancer World Health Organisation
What is Breast Cancer? | Breast Cancer UK
Breast Cancer Symptoms & Signs | CoppaFeel!
Fibromyalgia definition references:
About Fibromyalgia - Fibromyalgia Support Group UK | Fibromyalgia Friends Together
Chronic pain reference
What is chronic pain? | NHS inform
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