Long time I haven’t written but I have been working very hard to improve my health.
I started oxygen therapy a few months back and I am having brilliant results.
I will try to break them down here.
Brain fog
I had been experiencing brain fog for a while and didn’t know why, but it was becoming increasingly harder and harder to focus and concentrate. My double vision wasn’t helping, that was causing me to feel very tired whenever I tried to focus and read.
Instantly with oxygen therapy I experienced the fog firstly clear whilst having oxygen but soon after I was able to concentrate very well when not having it. Now with repeated therapy my brain is firing on all 4 cylinders. Razor sharp.
Physical strength
Also I have become stronger physically in my core and also my legs. I was previously struggling to walk as my legs felt so heavy and tired. Now they are stronger for longer and take longer to tire. I still have a spasticity that occurs when I walk but only when I tire or try to walk faster. I do still walk very slow but I have improved.
Eye site
My eyes are tested each year and deteriorate every year, but this week I had my eyes tested and they have reverted back to how they were in 2022. Still have double vision but the optician is going to put the prism in the lens, as opposed to me normally having to stick on the cut out prism with lines.
Thyroxin
My recent blood test showed that my thyroid levels are fine so today I reduced my dose even further to only 25 mgs . It was 100mgs which I have been reducing in 25 mgs increments, now down to the last. I believe the oxygen has healed my body from inside.
Torn tendons
The torn tendons in the backs of my knee are healed and haven’t torn again this year. My legs have drastically changed shape. In fact my whole body has changed shape since having oxygen. All swelling is disappearing.
Outside Oxygen
24 feet dive
Blood results from May 2024
Sleep
My sleep has also improved. Whereas prior to oxygen therapy I awoke many times throughout the night and needed to rush to the toilet, I quickly found myself sleeping through the night and when I did wake up I didn’t need to rush to the toilet as my core became stronger.
What is not fixed
Hip flexor
When tested by the physiotherapist at my new drs I couldn’t lift my knee up in sitting position, when he held it down. Both leg’s but left is weaker. He referred me on to the msk team but they referred me back to obtain more info.
I am awaiting my first appointment with them.
Climbing stairs is very hard work and a struggle. Therefore I am limited in how much I can go out dependant on how much strength I have. Coming down can be hard too when my knee limits my range of movement, making it that I am unable to bend it enough to manuver the action required. When this occurs I have to go down sideways and if tendons are torn I have to slide down the stairs.
It appears that activity to strengthen the muscles is not helping, but it may be a neurological issue causing it.
Ms hug
I recently learned of ms hug and that helped me understand why for years I have been experiencing tightness around my ribs. I could not understand why it was happening and put it down to anxiety, even though I don’t feel anxious I assumed I must be anxious without awareness. Therefore I tried breathing techniques to try to resolve but only fell to sleep and didn’t really feel any benefit from.
Since learning of ms hug I am understanding it as a neurological issue. I come to learn that by wearing a rib support; created for broken ribs, actually helps me stay upright longer. It seems to give some bio feedback to my brain to become aware of my muscles and enables me to breath better and more deeply.
It also helps me with my lower back instability. Previously the tightness in my ribs I was assuming sometimes happened because my torso is weak and the lower back struggles to hold me up, I believed therefore the ribs were tightening in an attempt to compensate for the weakness and hold me up. Therefore I was unable to stay upright for long when this occurred. I gradually become too weak to hold myself up and need to lay down. Sitting isn’t an option.
Now with understanding of ms hugs and the use of the rib support I am able to stay upright for longer.
Instability in lower spine
The instability in my lower spine still exists and is often the first body issue to stop me doing more with my time upright.
Fatigue
Fatigue is still a major issue although much improved by having oxygen. But is a major contributor to the weakness in my lower back.
Body jerks which I now found the medical term for, although currently don’t recall , have continued much the same, and also tiredness
Is very connected to. In that if I do too much my body will jolt repeatedly and rest will be needed for the body to calm down.
Continuing on Thursday 13 June 2024
Another issue is after activity the leg muscles tend to seize up. They become tight and stiff.
I have learnt that sometimes if I stretch the muscles I can resolve it but if the muscles become tired I can’t resolve the weakness and stiffness. The spasticity seems to be related to how fast I try to walk, whereas the weakness/ stiffness can either tie in with the spasticity or with muscle fatigue. With the muscle fatigue I have to rest for the muscles to recover.
Oxygen does improve the recovery time needed. After oxygen I may find recovery from the muscle fatigue but it does not last longer; more like it gives me a little boost.
I am now currently having a break from having oxygen as I have had quite a lot and intense; 5 days a week. A consequence of this has been that my vocal cords are maybe drying out from it. I have developed a croak. It is effecting my singing range; giving me a raspy sound and preventing me from holding high notes. Along with this I have had issues with my ear pressure, in the diving tank which I initially fixed with ear drops , but it returned needing me to use drops again. This is indicating the eustachian tube are having issue with the pressure; although this started last week along with a stickiness in my chest , sneezing and a feeling of a virus in my body. So I decided to take a break from oxygen and healed the virus.
I will return to oxygen therapy when my vocal cords are normal or if I start experiencing brain fog or fatigue as before. It will be good to see how long I can go without oxygen and what will happen meanwhile, for I have learnt that the oxygen stimulates stem cells to grow and even after stopping oxygen therapy they continue to grow.
Monday 24 June 2024
Update time
Returned back to oxygen tank today
I stopped for a break from oxygen therapy over 2 weeks ago. I monitored how well I did without it. It took 2 weeks for my vocal cords to return to normal. But I found after 2 weeks, that was last Wednesday I found I was not recovering from my daily activity as had been the case. I rested but it didn’t really help. It seemed my legs couldn’t recover fully on their own and I found each day since they were weak and stiff. Activity helped my mobility somewhat but the muscles seized up after. I also felt a tightening in the circulation of my left knee/ calf , with some pain. I elevated my legs as much as I could to help but full recovery didn’t happen. Therefore today I have returned back to a 33 foot dive, that I am currently having and will see after how it helps, then let you know.
New issues arising
I have been experiencing no sensation of appetite since maybe Friday just gone. I am therefore having to make myself mindful to eat. I find when I do I experience no issues eating and can eat whole meals, so must have an empty stomach but no sensation of full or emptiness.
I also feel wide awake when I should be tired. Meanwhile physically I am tired. In Chinese medicine it would be called ‘empty fire’ but it is usually accompanied by anxiety. I don’t feel anxious in any way meanwhile and when I do lay down to relax I find my breathing is good, as opposed to tightening of my ribs which I experienced in the past.
I don’t believe it to be a thyroid matter, as I recently reduced my thyroxine so if anything I should be tired from doing so.
Anyhow I am adding this noticeably variable to share and monitor it. But will continue to remind myself to eat , as yes I also know if I eat I am more likely to sleep.
After returning to oxygen therapy
After my return to oxygen therapy yesterday I found that yes I was initially stiff after sitting, I soon with movement became able to walk much better, in that much of my strength was restored and my fluidity of movement was improved. I also found that I slept very well, without waking. I felt much rested and stronger but not to the capacity I had previously achieved with oxygen and after. I therefore decided to have another 33 foot dive today, hoping it will be sufficient. Currently though I am still learning of how oxygen therapy works for me. I expect to find some optimal amount of treatment that suits me. Wonderful is this treatment option for restoring my health.
33 feet dive
3 July 2024 Wednesday
Update after another break from Oxygen therapy: Physical Fatigue, weakness in legs and broken sleep
Following on from last week ( Tuesday)
After having the oxygen last Tuesday I felt better in that I had not been recovering from my daily activities after a two week break. I continued to feel ok on the Wednesday and maybe the Thursday but then I started to feel weaker in my legs. I chose to rest each day the best I could but the strength was not good. I therefore understanding that the recovery with oxygen was not long lasting I chose this week to delay my therapy until today and this coming Friday, in order to be stronger for the weekend. I am hoping that I can get away with two treatments a week, but I am still learning what is optimal. Today is therefore 8 days after the last session and I have been fatigued physically and my legs feel heavy and tired. My focus is not good either and I feel sleepy. Last night my broken sleep was back also.
So hopefully this current treatment will help me .
I would also like to add here that I had a phone consultation with my neurologist last Wednesday and sent her a copy of the previous posts to this blog along with the doctors report on my MRI scan of my left knee I had done privately in January this year.
She was not familiar with oxygen therapy so asked much about it.
She also said how my previous MRI scans of my brain and spine showed no signs of ms scarring.
I told her of my ‘ms hug ‘ issues and again she said she wasn’t familiar with it. So I explained my experience with. She had previously scanned my lower and upper spine but not the middle (ribs) and therefore said she would refer me for MRI scans of both my brain and middle spinal area. So I await the appointment.
Update 8 July 2024
Health update continued
Last week I had 2 33 feet dives, one Wednesday and one Friday, in hope that I could have the energy it brings for the weekend. It worked in a way. I wasn’t super energised but enough for me to go do some singing. This I find very good for me spiritually and also I find it energising. My body also works back to front when it comes to dancing. I find that dancing actually energises me too and works like a release of stagnant energy. I found a place playing roots reggae yesterday and I was feeling quite tired, heading to the bus stop but upon hearing the bass and absorbing the vib , I found myself lifted in spirit and energy. Once home my legs stiffened up but it demonstrated how music and movement can help.
Today I decided to have 3 sessions a week as last week the wait until Wednesday reduced my ability to do things prior to then.
I am therefore currently having my oxygen but not in the chamber. The reason being is my voice became croaky again after Fridays session, plus my ears became blocked both times last week and still haven’t unblocked. I therefore have decided to do outside oxygen therapy until my throat and ears return to normal. I add that also this morning when I used a cotton but to try and unblock my ears I found a small amount of blood on the bud . I don’t think it is therefore wise to go in the chamber currently.
Health update 9July 2024
After speaking with the oxygen chamber controller regarding the blood I found in my left ear. He said I would not be allowed into the chamber until I had been examined by a doctor. So I went after oxygen to my Gp surgery. The earliest appointment was for 2 weeks time.
So until then I will have to just have outside oxygen.
Meanwhile I have been seeking help for housing , I will add a new blog post for as this one is long and needs to stay on topic of health
16July 2024 update
Received appointment for next February with my Neurologist.
She arranged for a MRI scan of my brain, thorax and pelvic area of spine. They will be done soon in August . She also wrote a report, in which she says my past scans show no signs of MS and she wrote the area’s with any damage on my spine and brain. But I understand it to be not MS scarring but small vessel disease.
Regarding my eye tests carried out in April, they were booked to be seen by a consultant last week, after my phoning the department for feedback and then them booking the earliest appointment for consultation. I am hoping that they write a report soon ; for my Gp appointment regarding my ear is next week.
I meanwhile have been trying to clear my eustation tubes via nasal spray and yesterday started doing Austin Goh videos
He says do for 2 weeks. It has been effective in moving congestion but not removing. There has been no more signs of blood.
Yesterday I did a stretch class at the ms centre and had oxygen after ( outside) it helped loads but my legs are tired today from activity. Plus this morning I have had a lot of head fog , especially on left side of my brain. I slept well in the night, so I can’t explain why.
So I am out on a bus writing this as I find it very helpful to relax on a bus and write at my own tempo; I find it therapeutic travelling through the countryside.
Appetite awareness is still weak/ absent. But I am staying mindful to eat enough as I am losing weight without intent .
Continuing on from last update today being Friday 2 August 2024
Since I last wrote I have continued to have outside oxygen 2/3 times a week but I have been experiencing much tiredness prior to my time spaced oxygen sessions. After each session though I am always improved in strength. Saying this though I may have been over doing things. It is my nature to push myself and my recovery is not as fast with less sessions per week. Consequently this week has been extremely hard. I had oxygen outside on Monday, where I was weak after the weekend. It did restore my energy somewhat but then I rode my tricycle to sort out my banking issues rather than taking the bus. I cycle very slowly and stop many times but I think it was too much strain on my body. But coupled with this is it has been very hot this week in Brighton and so that is also tiring. The result was by Wednesday I had spasms in my lower back leaving me finding it hard to walk. Yesterday, Thursday I awoke and was very tired and my back was struggling to hold me up and some pain in my lower back where muscles were tightening up. I pushed myself to get to the oxygen centre on an empty tank of petrol, as money has been extremely tight. I struggled to get into the building from the car as my back was extremely weak and couldn’t hold me up, and my walk was totally uncoordinated and spasticity in movement. I wobbled with my hiking stick and struggled to stay upright in the chair but after an hour I was somewhat stronger and a bit more fluid in my movement with my four wheeled trolley. I came home and did my best to rest in hope of restoring my strength. My muscles in my lower spine were causing discomfort and I struggled to stay upright. Meanwhile laying was also uncomfortable. So I spent a lot of time laying flat on the floor.
Walking was not improved but I eventually slept long from about 8 pm till 6am when I arose this morning I was able to stay upright for short periods of time and so was able to organise myself in small episodes. I now have returned for more outside oxygen, which is enabling me to focus to write now.
The hunger and thirst sensations have remained somewhat absent so I continue to try and remind myself to eat and drink. I spoke to a man yesterday with ms who said he has the same and uses an app to remind himself.
My ears are ok now and congestion is minimal.
My mri scans are next week.
This week especially I am experiencing hot flushes and sweating like I am melting but I am not menopausal, that ended years back.
Hopefully today’s oxygen will put me back on track.
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Moving on today being 5 August 2024
I have been through a whole journey of discovery.
After oxygen last Friday I was stronger overall but still my lower back was struggling to hold me up. My spasticity was less but still not coordinated well. I struggled to stay upright so went home and laid on the floor for the rest of the day. This helped as staying upright was just too hard. It was like the top of my pelvic area was without any strength in the muscles. My upper body was trying to compensate for that but I was only able to stay upright with a Zimma frame for short periods of time. After a night’s sleep I awoke feeling a lot more stronger but still a spastic walk and a sense of weakness in the lower back muscles. I find laying on my back does help but it was like the muscles were in memory spasms from my time of not walking/ surgery of that area in 1998.
This occurs sometimes when my body is tired and also when I am stressed, which I currently am due to numerous issues , some the lack of money to fund my oxygen/ petrol costs , coupled with fun and games gaining access to the money owed to me from internet sales and others issues that accumulate due to this situation. Resulting in me having to use buses and my tricycle last week when I was not really strong enough to.
But I come from a family line that suffered with their backs and so once strengthened by oxygen on Thursday and Friday I was on Saturday able to lay on my back and hold my knees as close as I could and rock. (A technique my father used on himself and taught me as a child) This helped to unlock the muscles that were tight and locked. After which I went out and walked very slowly. It was pride day in Brighton so I headed for the fun and music. This I add is another twist to my funky ways of functioning. It is that when I hear music I can walk much better and coordinate. I am believing it is due to which side of my brain is operating. The right side is for creativity and includes music and singing. The left side is for logic. I believe my right side is stimulated by music which in turn enables me to walk smoothly and dance well. Yet when the music stops my spasticity returns. Another aspect of this is if I dance I am somehow energised by doing so and it is like it cleans stale toxins from my body in sweat. Which I add is a new thing I am experiencing which I wrote about above. I saw the Chinese dr I know last week and he said it was not menopause. I spoke to some ms people today who told me how they get it too in heat and how heat makes them tired. I am a sun worshipper and therefore can see how last week when I was rendered so weak it may have also been related to the heat, as it was very hot here.
I found I was able to dance and sing at pride but yes I did gain energy from but after was knackered, understandably. And left hip some sciatic discomfort come morning.
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