Moved to new retirement flat - now exhausted due to PEM

[YippeeKi YOW !!]

Synthroid (or Levothyroxine as they call it here in the UK)

Synthroid is the brand name, levothyroxine sodium is the actual chemical active form. So y'all are probably getting a generic, which might be even less effective ..... go figure ....

 

[Booble]

With the NHS we pay for prescriptions to the tune of ~£9 per script (although we can pay ~£100 a year for all of them) and maybe we have to buy some equipment sometimes, but operations are not charged and neither are appointments. We pay via taxation collectively in the sense that everyone pays 11% National Insurance tax past a certain earning threshold and in total the NHS costs £176 billion a year out of the ~£1200 billion national budget but for the patient directly there is no cost.

Even privately operations are a lot cheaper. I have had a couple of private operations and they were both about £2000, an MRI of my lower spine was about £250. So even the private cost is a lot closer to the actual cost than the ludicrous prices charged in the USA.

9 pounds per prescription. That's how much ours cost 40 years ago. Some how they all turned into $125+. I know there are challenges with national healthcare but it's a shame Americans can't get their act together on it.

 

[vision blue]

What caused your macular hole? I have when as well. Partial thickness.

What percent recovered are you from the move- ie what percent of premove are you now ?

(I also prefer anerican system and dont want it get nationalized. Already treated like a sheep as it is and centralization would mean something like everyone gets their 4 tests some panel decided is best for everyone- end of story. No negotiating, no tailoring etc. woukdnt mind some kind of voucher system tho where i can use those credits as i see fit)

Hows the noise adaptation going?

 

[brenda]

Interesting re the chicken necks. I did not know that... happily I now have my T3 OK if not the usual one....

I can understand how tempted you must be re the sheltered flat, and especially if it's in your home town! Any move is a disruption and means energy taken, but sometimes you have to look at the bigger picture and the future. It sounds similar to my own sheltered accommodation - not sure how much I have in common with people here, but they are really friendly and that counts for a huge amount.

Thinking of you as you consider it.....is it far to travel from where you are now?

I got that about chicken necks from the Ray Peat forums and some of them swear it helps, taking their temps daily to prove it. I've got some coming today

It is about 15 miles from where I am now, so not so far.

They are extremely friendly there and it seems to be the shelter that is taken by the more disabled and sick as there is no pub or shops nearby, it is right on the edge of town, so in that way it will be better for me (have decided) A few of them are in wheelchairs and some have carers coming in.

At the coffee morning that was arranged by the warden (who is lovely) I met about about 10 of the residents and they were very nice, one of the women begged me to move in as she felt we were on the same page over various things. We were!

Another woman knew some relatives of mine. This is the thing with going into social housing meaning the working class of that town. In mining communities, if they do not know your family background you will be considered an outsider and of course being my hometown they do.

So it is all set and I have 4 weeks to get out of here which is a nightmare as having COVID twice here, once very bad, shingles in the eye, and my 46 year old daughter dying a drug related death means that the place is a mess. I can get an extension of the new flat though with rent paid for both properties for a while.

I am holding up though know that adrenaline will be my friend for now but will ask for a huge price later. Glad you have your T3. Thyroid hormones were no good for me as my adrenals crashed on very low doses even.

 

[Emmarose47]

I was just day dreaming about my old life in Brighton when I was younger , well and life felt easy ..
Good to hear about your move ..
I'm facing homelessness and registered with the council .. I'm also on homechoice .
It's all v scarey and I just can't see how it's going to happen being bed and housebound .
But I can and will ask and hire help ..
Seems it will be around October time .
I'll either be facing multiple moves due to emergency / temp accom before my own place . Accepting a direct offer ( I don't get to choose
Or something comes up on homechoice by then ..
I trust divine intervention but when the fear hits it's hard to bare..

 

[brenda]

My prayers are with you Emma. What about sheltered housing for you?

 

[Emmarose47]

My prayers are with you Emma. What about sheltered housing for you?

Thanks Brenda ..
I did go through a time of thinking about it around the time I was having social work assessment ... The sheltered is usually over 60. However over 50s has been opened up to me so that's positive ( I think
Are u in the UK Brenda ? May I ask what the process was of you being offered sheltered ?

 

[Sarahloudobby]

I have been chronicling my move with ME here over the past months, with long gaps in between. It was lucky that I had a 6 week break with my sister in law and her husband not too far from where I have moved to, as at the time I was already suffering from exhaustion/PEM, and to have come straight here might have finished me off.

I honestly don't know how I could have done it better - moving alone, with little support, but this break in the middle was wonderful. They were kind and supportive, and brought me up to my new flat (Greater London) by car - only about an hour from Brighton and Hove on the coast of Sussex where I was in fact brought up.

I have been here 12 days and there are still many boxes to unpack, but I am getting there. The removal company were not great, but that's another story.

On the plus side it's a pleasant flat and not too noisy if my door to the garden is kept shut. I am lucky so far with little noise from above (some distant buzz of the TV sometimes) and the one neighbour one side. Not so good is that the flat is nearer to a main road than I realised (I didn't actually see the flat before buying it as too far to travel), and I am used to a much quieter environment. It's not too bad with the door shut though, and I don't hear much in my bedroom so no sleep disturbance.

The bus stops are very close, and I hope to be able to use my Freedom Pass to get to the parks here nearby. The other residents seem mostly friendly, but they are generally older than I am and most come from this area and so have friends locally. It's quite challenging to come to a new place to start again at the age of 70.

My biggest worry at present is the possible battle I face with my thyroid med being stopped or challenged (Liothyronine/T3) - it's hard enough to get a small dose of it with T4, but I have been on T3 monotherapy for 9 years. Local endocrinologists I have discovered do not approve of it - at all! Currently I get it for free, on the NHS, but I suspect I will end up self supplying while I am going through this. I have a pharmacy review tomorrow on the phone, so no doubt I will hear the worst soon....

Wishing you happiness in your new home x

 

[brenda]

Thanks Brenda ..
I did go through a time of thinking about it around the time I was having social work assessment ... The sheltered is usually over 60. However over 50s has been opened up to me so that's positive ( I think
Are u in the UK Brenda ? May I ask what the process was of you being offered sheltered ?

Yes l am in the UK. I asked for rehousing with Key Options partly due to not being able to use the shower installed over bath, and problems with neighbours. I was given grade 4 which is useless so got a GP letter and applied through my present housing association. It went through quickly.

 

[Emmarose47]

That's good news Brenda

 

[vision blue]

What is sheltered housing?

 

[Emmarose47]

What is sheltered housing?

It's a social housing scheme which offers independent living often in apartments . The schemes have a sheltered manager who over sees the building , may do a curiosity call to each resident each day and helps with any communication with other professionals involved in the person's care .
The schemes have communal gardens, laundry rooms and maybe TV / activity room.

 

[Emmarose47]

Yes l am in the UK. I asked for rehousing with Key Options partly due to not being able to use the shower installed over bath, and problems with neighbours. I was given grade 4 which is useless so got a GP letter and applied through my present housing association. It went through quickly.

I've had a very bad week and am on the bed can hardly move and in a lot of pain .
Yesturday things came to a head and I just thought I really can't cope and need more help .I contacted the mental health team and have asked my care co ordinator to contact social work team to assess.me for care / housing - I'm considering sheltered housing . I did have an assessment in April but shunned the idea .
I had to get rid of the home help recently as it was causing problems in the shared hosting I live in .
I need more input and for things to be made easier for me. Im not well enough to go through homelessness and try and battle the whole system .

 

[brenda]

I've had a very bad week and am on the bed can hardly move and in a lot of pain .
Yesturday things came to a head and I just thought I really can't cope and need more help .I contacted the mental health team and have asked my care co ordinator to contact social work team to assess.me for care / housing - I'm considering sheltered housing . I did have an assessment in April but shunned the idea .
I had to get rid of the home help recently as it was causing problems in the shared hosting I live in .
I need more input and for things to be made easier for me. Im not well enough to go through homelessness and try and battle the whole system .

Good, it sounds a good idea for you. Hope resting will improve things quickly for you. I imagine that just being in sheltered will make one feel safer. I know I will as sometimes there is a warden around. Things are going pretty bad for me. It is utter chaos and I feel too frozen to get things done. The laminate in my hallway is half way removed by me after a gas engineer told me it would be necessary to find the water leak he said I had. The housing association said he gave me wrong information but neither of them are accepting responsibility to fix it and it has now expanded with the heat and will all have to come up. Moving day 07/08 but will need longer.

 

[brenda]

It was very useful for me that the warden arranged a coffee morning for the residents so I could ask questions. One of them knew all about the various ones in the area and told me this one is the best size of flat wise and cost. I would advise this if it is possible. Knowing some of them already is making it easier.

 

[IThinkImTurningJapanese]

With the NHS we pay for prescriptions to the tune of ~£9 per script

When I was in the UK as a temporary resident, I received the same benefits. I developed a healthy respect for community well-being.

 

[Emmarose47]

Good, it sounds a good idea for you. Hope resting will improve things quickly for you. I imagine that just being in sheltered will make one feel safer. I know I will as sometimes there is a warden around. Things are going pretty bad for me. It is utter chaos and I feel too frozen to get things done. The laminate in my hallway is half way removed by me after a gas engineer told me it would be necessary to find the water leak he said I had. The housing association said he gave me wrong information but neither of them are accepting responsibility to fix it and it has now expanded with the heat and will all have to come up. Moving day 07/08 but will need longer.

It's difficult isn't it when we have all this stuff going on and chronic health ..
All we need is to be taken care of .
I never knew life could get so difficult ..
Let's look forward to easy times ahead .
Just taking it one day at a time attending to put health and what we can do little by little ..

 

[lenora]

IYes, a house can quickly become a huge liability when we aren't feeling well. Even then it's hard.

I could quite easily move, but my husband needs lots of room to roam in, fix things, etc. He's a great help, and I hope it never stops.....still, it can be a worry.

You've been doing a lot lately, Emma Rose47. I hope it won't be long until you're feeling better. Yours, Lenora

 

[mermaid]

What caused your macular hole? I have when as well. Partial thickness.

What percent recovered are you from the move- ie what percent of premove are you now ?

(I also prefer anerican system and dont want it get nationalized. Already treated like a sheep as it is and centralization would mean something like everyone gets their 4 tests some panel decided is best for everyone- end of story. No negotiating, no tailoring etc. woukdnt mind some kind of voucher system tho where i can use those credits as i see fit)

Hows the noise adaptation going?

Sorry for the long delay in replying @vision blue

It's hard to say exactly why I had the macular hole but I believe it was a combination of events. Firstly I have a genetic condition called Lattice Degeneration which is a kind of fraying on the edges of the retina - it's pretty common, as around 11% of people have it apparently.

Probably doesn't cause many issues unless it's combined with the second reason which is going through Posterior Vitreous Detachment which in itself I believe is a relatively normal event related to ageing (the vitreous in the eye becomes more liquid and pulls away from the retina - this is fine as long as it doesn't stick to it, as it did for me it seems, both with the macular hole in my left eye, followed by the detached retina that subsequently happened in the right eye), (twice). I needed an op for both, though the detached retina is an emergency.
https://www.nei.nih.gov/learn-about...xt=Macular hole.,floaters or flashes of light.

It's hard to describe how much recovered I am from the move in per cents, because I had a jolly good rest for 6 weeks at my sister in law's house and was feeling really good doing nothing much, but then followed by moving in, which has meant weeks of unpacking while trying to adapt to a new environment, thus sending my % worse again. I had exhaustion on week 2 and felt really bad, but then picked up again. Currently I have pushed myself too much again and gone back down again, though not too badly.

My son disappeared for 3 weeks which didn't help. He got Covid, though thankfully he didn't have it when I last saw him as I think he caught it that evening, 3 weeks ago as he went to a concert with his wife. Luckily she didn't get it either from the concert or from him. No sooner was he well (just under a week) than he then went off on holiday for a week. So I have felt rather alone at times and pushed back on my own devices with the practical stuff. Today he reappeared, and is going to put up some well needed shelves for me in a couple of weekends which will clear the mound of boxes in the middle of the main room! He also helped me with some other things, but I will be calling in an electrician for some things too.

Thankfully, I do seem to have got used to the noise issues mostly, though I note that it varies with the time of day. Quieter in the evening and night, and noisier on the road in rush hours.

My other issues that I have only just about resolved was re the shared laundry. I could not abide the smell from other people's laundry as they use perfumed washing liquid and dryer sheets, whereas I like my washing unperfumed. I would not say that I have MCS exactly, I just think that these products smell toxic and are unnecessary. There is no room for a washer in my flat, so I have no choice. Happily, after some experimentation, I have now found that the worst smells are caused by the dryer sheets not the washing liquid, so I am bringing my washing back to dry in the bathroom which is big enough to hang washing up. Thankfully after a wash cycle with my liquid there seems to be only a faint smell occasionally. What a relief!

 

[mermaid]

I got that about chicken necks from the Ray Peat forums and some of them swear it helps, taking their temps daily to prove it. I've got some coming today

It is about 15 miles from where I am now, so not so far.

They are extremely friendly there and it seems to be the shelter that is taken by the more disabled and sick as there is no pub or shops nearby, it is right on the edge of town, so in that way it will be better for me (have decided) A few of them are in wheelchairs and some have carers coming in.

At the coffee morning that was arranged by the warden (who is lovely) I met about about 10 of the residents and they were very nice, one of the women begged me to move in as she felt we were on the same page over various things. We were!

Another woman knew some relatives of mine. This is the thing with going into social housing meaning the working class of that town. In mining communities, if they do not know your family background you will be considered an outsider and of course being my hometown they do.

So it is all set and I have 4 weeks to get out of here which is a nightmare as having COVID twice here, once very bad, shingles in the eye, and my 46 year old daughter dying a drug related death means that the place is a mess. I can get an extension of the new flat though with rent paid for both properties for a while.

I am holding up though know that adrenaline will be my friend for now but will ask for a huge price later. Glad you have your T3. Thyroid hormones were no good for me as my adrenals crashed on very low doses even.

Hello again @brenda , and sorry for the delay in replying. You wrote this about 2 weeks ago, so you only have 2 weeks before your move. Your place does sound similar to the one I am in, as there are people here who are very disabled, (one woman with MS looks similar age, but much more disabled than I am), and some who are relatively fit.

Thinking of you as you get ready for your move, as it's a big strain for sure, and now I am at the other end, yes, I think my adrenals are crashing badly too now and I don't really know what to do about it, other than try to rest I guess. I am only going out about once a week (at most twice), so I am not exactly living it up in the London nightlife.

How lovely that the warden arranged that coffee morning for you to meet other people in the sheltered housing place.

I am so sorry to hear what you have been through with regard to your daughter's death and the shingles. Very hard on top of having ME issues.

I did a lot of support work from afar with my middle son who has schizophrenia, and had DWP issues and it came after my mother and husband's death, so not surprising I am exhausted really.

I think having Covid (albeit mildly) in Dec 2020 has affected my ME for the worse, as I really didn't have brain fog or the energy loss I am now experiencing. Unfortunately it's affecting my mental health too - the lower my energy falls the more depressed I feel. It feels like wading through treacle.