Flow
- baticamoomin
- 3 days ago
- 7 min read
It's been six months since losing Aragorn. It's been longer since I properly updated about where I am with my health, and since I'm feeling especially low with my health, I decided now was as good a time as any for a vent dressed up as a blog post. Even though chronic fatigue has really been doing a number on me.
I will try to put into words where I feel I am at with the loss of Aragorn, the latest medical stuff, and a fun new potential diagnosis.
Aragorn
I will start off with something positive. I'm not crying every day. The loss isn't as red and raw as it obviously was in the days immediately after we said goodbye to him.
For the most part, I feel like my heart has accepted the Aragorn shaped void in it, but it doesn't mean that it doesn't feel like it's yawning wide open. I will be fine and then I will be gut-punched by missing him.
I can smile at fond memories, but I can't think about him without immediately being transported back to the moment of losing him. I wouldn't trade in being with him at the end, and a part of me recognises that it was a special and beautiful moment in its way. We did the best by him. Two things can be true at the same time, and the other part of it is also recognising that the experience was a bit traumatising.
It's still deeply upsetting to remember how quickly he went downhill that week. How an already skinny old man, lost even more weight. Lost the appetite that was such a big part of his personality. Hardly leaving his bed yet rarely sleeping because we think he was having issues breathing.
I'll get stuck thinking about each day in the run up to his final day. The worry. Agonising over when to make the call. Constantly watching him. Battling with thoughts of it possibly being best if he could go quietly asleep in his bed, and dreading finding him in the morning gone.
There's no beginning, middle and end to losing and missing Aragorn. There isn't going to be a point where it fully stops hurting. Where grief is completed.
I'm just trying to focus when I can on being grateful that I had him for as long as I did, and it's okay to just feel rubbish when it feels rubbish. Maybe there will come a time when I don't feel the emptiness in my arms when I'm having a snooze on the sofa, or my lap when I'm reading, but in a way, I want to feel it because missing him makes it feel like he's close by. What I fear most is forgetting what his meow was like, or his purrs, or his weight and fur.
Discharge back to GP
A few months ago I had a final telephone consultation with the gynaecologist following my hysteroscopy last year. I wish I had more to report but it's kind of all felt a bit pointless. She was happy with how my uterus lining was looking and that the coil was doing what it was supposed to be doing, but I felt a bit deflated when she said she wanted to discharge me back to the GP with only a suggestion of possibly giving me a prescription for additional progesterone .
No further investigations. No hysterectomy . I thought considering I had had two previous laparoscopies over the years that found Endometriosis, Pelvic Venous Congestion Syndrome, and polyps that another laparoscopy would at least be on the cards, but nope.
So I'm back to square one. Still in continuous pain. No change to my current treatment, which is just painkillers and sucking it up.
Where I am now...
I have ups and downs, not just with my symptoms, but how I mentally cope with them. Sometimes the codeine and resting keeps thing at a dull but manageable roar, and then other times when everything flares up. At the moment, I'm right in the middle of flare-up territory. I'm not sleeping well, I'm exhausted all the time. My lower back, pelvis and legs are hurting a lot. Every time I stand or walk it feels like I have a weighted belt around my middle tugging down. My Vestibulitis is being an utter bitch. Firey little needles constantly stabbing my already sensitive flappy area.
My mood is unpredictable. Brain fog is a constant that I have to try to navigate through. During my sweet summer child days, I could feel utter bemusement at the thought of not being able to control my own reactions and being at the mercy of instant rage. That was until Perimenopause entered the chat and I feel I could commit murder because my belt loop got stuck on a door handle.
Mentally, I am okay and not okay. It's a very familiar yo yo pattern, but even after several years I can just feel utterly fed up with it. Especially when I feel like I've slipped through the medical cracks. I don't even know which condition is the culprit to my systems a lot of the time because there are so many shared symptoms.
At least I'm pretty confident that night sweats, hot flushes, mood swings, and brain fog I can give the side-eye to Perimenopause.
Next time I speak to the GP I'm going to follow up about the additional progesterone supplement since it does not appear that she received a response from the consultant when she requested some clarification. So that needs following up.
I've been on Estradiol HRT patches since 2018 and I would like to review if I'm still on the correct dosage. I do still suffer with night sweats and hot flushes so maybe the dosage should be increased. I just don't know. The only review I have with regards to that prescription is my weight and blood pressure.
Maybe since I get private medical insurance through my work, I will try again to see a specialist. Maybe I'll try asking for someone else. The previous one was perfectly nice, but all the consultations were over the phone. I only met them once and that was for the hysteroscopy.
ME/CFS
I've always been aware of the chronic condition, ME/CFS. It's been more on my radar lately and I think it might be something worth investigating. Not because I'm hugely wild about collecting another condition, but what I have read has given me enough pause to think it might be a serious contender. Some of the symptoms from the ME Association website really jumped out at me:
Debilitating fatigue: worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest My daily issues can be characterised by the constant feeling of tiredness for no outside reason. My body is just exhausted from existing.
Post-exertional malaise: activity causes worsening of symptoms and is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer. I always have to factor in recovery time whenever I am planning any social activity. I often refer to it as my "social battery". Anything beyond my day to day hermitude will need time after to decompress and rest. A lot of the time that I book off from work is time after a particular event or activity so that I have some recovery days.
Unrefreshing or disturbed sleep: feeling exhausted, feeling flu-like and stiff on waking with broken or shallow sleep, altered sleep pattern or hypersomnia I am always in a battle with keeping my sleep pattern in check. When that is off, everything else just heighten and I feel all over fatigue and my other symptoms could definitely be described as flu-like.
Cognitive difficulties: may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking (“Brain Fog”) Some days when the fatigue is bad, I don't have the energy for even little things like responding to messages or memes sent to me. I have to keep notes in phone or tasks at work so that things don't just completely fall out of my memory. It's worst when I can't even concentrate to read and I just end up zoning out.
There are other common symptoms that I also tick the boxes on. The only problem with potentially getting a diagnosis for me is, a lot of the symptoms fall within existing conditions, but what if it's like Scooby-Doo and it was really ME/CFS all along?!
My own emphasis in bold italics for what speaks particularly to my experience:
Orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
Temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
Neuromuscular symptoms, including twitching and myoclonic jerks
Flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
Intolerance to alcohol, or to certain foods and chemicals
Heightened sensory sensitivities, including to light, sound, touch, taste and smell
Pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
I feel like I sit within the "Mild" range of severity:
"People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week."
This really rang true for me. Every time I do any kind of house work, I need to to take regular breaks. I work full-time but I work fully from home and most of my working weeks consist of me mentally just thinking about getting to the weekend so I can recharge so I can be at a reasonable level to start it all again on Monday.
I do want to start the ball rolling on potentially exploring the possibility that I might have this condition, but after getting nowhere with my set of investigations and tests, I've been putting it off because the thought of it alone has just been too tiring and intimidating.
In summary, I still miss and mourn Aragorn daily but I'm doing okay. I'm all over the place with health issues and confusion about what is going on in my body, and I have another potential condition to add to the tired ranks.
I don't like to end posts on a negative though, so I will end with this:
The symptoms of grief and chronic illness ebb and flow.
Every time I log off work on Fridays I can feel pleased with the achievement that I made it through. Every time I finish a book, it's proof that I can still complete activities I enjoy. And every time I am able to go out and see people, I feel supported; and the inevitable post-activity malaise and recovery is worth it.
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