Fatigue is controlling my life: I have tried to... - PMRGCAuk

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Fatigue is controlling my life

garethgti profile image
24 Replies

I have tried to keep in control of my illnesses but I am losing the battle. I have COPD,pmr, macular degeneration,kidney stones and chronic fatigue.

The fatigue is the worst I am steeping my life away I am not talking cat naps or 1-2 hours sleep in the afternoon, I'm talking 10-15 deep sleep almost every day. I have a wife that works to bring in much needed money and she as to come home to find me sleeping yet again.

We have a son that as been unable to go outside since he was attack and robbed 8 years ago he stays in his room and only comes down for his meals.I tend to cry a lot these days asking God why me.

is there any help out there to help me break this day time sleep ,

some form of medication that will 're-energies me I need to be back in control, I need to help my wife and son, It's not right that they are looking after me , I am the one to look after them it's my duty as a husband and father.

I am falling back into my clinical depression and I am not ready to go back on the anti-depression tablets , they stop me feeling, they block out my senses .

it's 2pm and I am alone my wife And son are both asleep, I can not imagine what my wife is going though, she as moments of anger when she is worried about the way I am she accuses me of not looking after myself and telling me that she worried that I am not helping myself and she doesn't want to loss me.

If we do Go out I need a wheel chair to get around and the sheer exhaustion of just getting into the car and then getting out and into my chair leaves me exhausted.

Life is passing me and my wife bye there seems no future for us. Holidays are not possible anymore my caravan as been parked up for 2 years.

SORRY for being so melancholy just needed to put my feeling into words and hoping that things will get better.

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garethgti profile image
garethgti
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24 Replies
ShellyC23 profile image
ShellyC23

You REALLY need a trip to the doctors as clearly you need help. You haven't mentioned your medication but I feel it needs to be reviewed. PMR, kidney problems and depression can all cause fatigue and your medication may need some adjustments. I can understand that you do not want to take antidepressants, I fought against them for years but eventually I gave in and they do help a bit. There are many different types so maybe one which would suit you better.

You know that you need help so please ask your doctor for an appointment today. Good luck

ShellyC23 profile image
ShellyC23

Sorry me again - after posting my reply I started thinking about your poor wife and what she must be going through. You AND your son owe it to her to get the help you both need so that you can hopefully return to some form of family life. Your wife cannot hold you all together indefinitely, the stress she is under may eventually male her ill and then where will you all be?

paddyfields profile image
paddyfields in reply to ShellyC23

Ask for a double appointment as you need time for a thorough look at your whole situation with bloods tests to check for any other causes of fatigue. I was given an anti-depressant 30 years ago which I could actually feel kick in and interrupt a downward spiral of thought and there were no other side effects so I should think there is even more choice now.

It might sound ludicrous now, and not knowing how severe your COPD is, but you might keep in mind the excellent scheme whereby the GP can prescribe exercise, i.e. recommend it and you usually get it at a cheap rate. The gyms that participate in this scheme have staff who have gone on courses to equip them to devise an individual rehab. type approach to the exercise programme Exercise, if you can bring yourself to the point of doing it, really does give you more energy. The more you sleep, the more you want to sleep which as you will know is part of depression.

The following link may prove encouraging

nhs.uk/conditions/stress-an...

Rose54 profile image
Rose54

Hi

I am so sorry that you are all going through so much

Has your son been diagnosed with PTSD if so some therapy should help .

Yourself with all your illness have a lot to cope you .

Are you aware of the Breath Easy Clinics held at most hospitals attending may help with COPD .

Have they looked at your Thyroid

Have you been tested for vitamin defieancy

Have you attended or been offered sleep clinic

In my experience I find we have to ask for all of these but if we don't know what is available we don't know .

Have you applied for PIP.

H/B or any other benefits

Would still seek advice from your GP

Sorry about spelling spell check not working this am .

Best Wishes

Rose

SheffieldJane profile image
SheffieldJane

I really feel for you and recognise the symptoms of a deep horrible depression. I have been in that place where everything seemed hopeless and beyond me. Physically your Seratonin levels are too low, the right anti depressant will actually change this. So it's not just blocking out emotions it's actually bringing about a chemical change, so don't dismiss them as an option. People do have to try a few before they get the right one. I also tried talking therapy with counsellor for years and sometimes she was a life saver. They say Cognitive Behavioural therapy is quicker and allows you to nod past those awful self despising thoughts. Mindfulness classes are not demanding and give you another way of being awake that is much more pleasant. Don't beat yourself up for sleeping so much, your poor body is trying to help and heal you.

When your family sees you trying a few things it will relieve them and perhaps inspire your son to brave the world again. Perhaps he should see someone at Victim Support, they help people who have been the victims of crime, for free.

Your physical symptoms make it harder to cope with all of this I know. My depression lifted with the diagnosis of PMR and the effectiveness of Prednisolone

Also my baby grandson fought his way into my heart and healed it. You never know what miracle might be waiting around the corner.Be kind to yourself one step at a time. When the depression lifts the same set of circumstances can look utterly different and hopeful. Bless you.

PMRpro profile image
PMRproAmbassador

Just 2 months ago you were saying, on another forum on this site, "Greet every day with a smile and treat every obstacle as a challenge.Be HAPPY!!"

So what has changed in that 2 months? You cannot "control" your illnesses on your own - that is what the medical profession are there for.

What you describe is typical of depression, especially the sleeping excessively. You may not WANT to take antidepressants - none of us WANT to take pred or any of the other medications that keep us able to function fairly normally. In the case of depression, as has already been said, there is cognitive behaviour therapy as well - CGT has been shown to be even more effective than drugs. I know it isn't easy to get quickly via the NHS but it IS available.

But although writing to a forum helps you articulate the problem and people do hear and sympathise with you, you have to take the step of going to your doctor - or getting your doctor to come to you if you are housebound - and telling them all about it.

It isn't your "duty" to look after your wife and son, I believe that is an old-fashioned concept that isn't always helpful, but it is your place to do the best you can for the partnership of your relationship. That is going to involve facing up to what are perhaps unpalatable realities and taking at least one step - telling the doctor. None of us can do that for you but we can encourage you to do so. And if you can't get to the doctor - then copy and paste your post into an email or letter to your GP practice and let them know what state you are in. And as Shelly says - your son owes it to your wife, his mother, to get the help he needs. He has had a horrible experience - but he should be young enough to overcome it with the right help.

Cemmein profile image
Cemmein

Dear Gareth,

I obviously don't know much about you but it does sound as though you have enough to have nasty depression & it might be a good idea to go back on an antidepressant. You may have to try several before you find one that works .

I too have PMR, &chronic fatigue & macular degeneration so very similar except I am 77 and had them for about twenty years.

Do remember depression is a physical illness not a weakness in character!

I have been inactive for years & it is so important to force oneself to walk through to the kitchen occasionally to get ones own cup of tea even if you don't feel like it.

If you can't walk do please wag your feet iot stand on your toes up & down while brushing your teeth to get some excercise. I use a buggy when I go out shopping ( they are cheaper than electric wheelchairs cos you can get them second hand from a disability shop) & it makes one feel less helpless than being pushed by someone else.

The only way I can keep in contact is to invite people in for coffee & always ask them about themselves without mentioning my moans. As you have various real hard difficulties yourself it will make you understand theirs better. I am sure your wife would make coffee for them.

If they ask what is wrong just tell them you have a boring chronic illness which is a pest but not life threatening.

If your son can see even a microscopic improvement in you then maybe it will help him too. But remember little steps! If you are depressed it is so hard to imagine being able to do things again. Maybe caffeine would chemo you stay awake during the day.

I am sure we all will Temember you in our thoughts and prayers.

All the best

Cemm.

P s I did just manage a week in the caravan earlier in the summer but getting in and out of it was hard! Caravans are good cis they are cheaper than hotels & you don't have to get up for breakfast etc! Reading is hard though unless you can get Radio & TV.

garethgti profile image
garethgti

Thank you for your words of encouragement I will try to get myself back on track I really don't want to go back to anti-depression tablets.

It's been 12 since my first episode of depression caused by over work it was a full physical and mental break down and as taken me 10 years to come off medication.

I can not come to terms with being unable to do even the smallest of task, so frustration sets in.

Thank you again and hope you are managing to stay safe and as well as your illness allows

Gareth

Zacsmimi profile image
Zacsmimi in reply to garethgti

Being off the meds isn't working.

garethgti profile image
garethgti

Thank you all for your support I needed to feel that I am not the only one suffering these horrible affects.

Bless you all

Gareth

Gosingen profile image
Gosingen

You've vented your feelings, now do something positive and get the help you need.

All the best to you and your family.

Nannie-C profile image
Nannie-C

Sorry you are feeling so down, it's hard when you have so many problems. Others are so right in saying you must let your GP know how you are feeling

Another thought came into my head when reading your post was " do you snore?" As excess sleepiness in the day can indicate sleep apnoea and this can be associated with some of your conditions, so if you do then add this to your list for the GP.

Good luck garethgti

garethgti profile image
garethgti in reply to Nannie-C

have had a sleep apnoea test all OK thank you

Deb61 profile image
Deb61

I also have giant cell ms fibromyalgia and was in a serious car accident. I struggle with being so fatigued it runs my life I have had the giant cell one year now and that was when fatigue got way worse. My doc thought a sleep study should be done and low and behold I now have severe sleep apnea stopping breathing 49 times an hour so now have a sleep machine it will take a long time to start to notice but perhaps a sleep test may be helpful for you. It is easy test and can be done at home.

GlynisE profile image
GlynisE

You and your son both need help. It seems you are both suffering from depression. The worry and stress of your son is affecting you. There is no shame on being on anti depressants. Go to your doctor and take your son with you if you can go. Sleeping is away to escape from the stress. I have up to two hours sleep after lunch. Just reading and then napping. Couldn’t do without it.

Please seek help.

in reply to GlynisE

Hi glynise...I don't know if you noticed the thread is 3 years old so don't be surprised if you don't get a response...straightaway.🌻

GlynisE profile image
GlynisE in reply to

No I didn’t! Feel a bit foolish now.

in reply to GlynisE

It happens a lot. I have done it several times. The advice was good!!

PMRpro profile image
PMRproAmbassador in reply to

Are you also getting notifications of these old threads without there being a new post?

in reply to PMRpro

No. Usually there's a list of similar messages at the bottom of the page and I start reading and it moves me to comment then I realise it's an old post. I have searched sometimes.

PMRpro profile image
PMRproAmbassador in reply to GlynisE

This is a very old thread - over 3 years ago. Did it come up in a search or did you get a notification?

GlynisE profile image
GlynisE

Notification.

PMRpro profile image
PMRproAmbassador in reply to GlynisE

As if it were something new? I was discussing it with a member of HU staff on Friday and said there is an impression something is triggering notification of old threads - so she wants examples of course!!

GlynisE profile image
GlynisE

I had been through a similar thing with my son. It rang a bell. I still get those feelings back 20 years later.

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