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Amanda Thorpe

Seasons of loss

21 posts in this topic

A few weeks ago I listened to a disabled speaker who has been blind since the age of 15 and is now in her 40's. She talked about seasons of loss, how she missed out on things growing up and that she still misses out on things now. That with every stage of life she had to experience the loss again, for example not being able to see her babies at birth but then also not being able to see them at graduation and so forth.

 

I thought to myself, the one good thing about scleroderma is that all my losses came at once, within a year I lost my health, my career, my ability to work again, my mobility and basically the life I had prior to scleroderma. At least it all came at once so it's over with right?

 

Today was an amazing day, my youngest stepson married his lovely fiancee and they with their daughter now make a wonderful family. My step daughter in law nearly cried during her vows and at the reception my step son gave a very moving speech during which he said about me, she is an amazing, a special person that I love, please hold her in the light...

 

...because I wasn't there. I won't be in any of the wedding photos, I didn't get to meet my step daughter in-laws parents, or see my granddaughter, or see my stepson's mum again or any of my husbands family.

 

So I have to chalk up another loss to scleroderma and accept that there may well be more to come.

 

At least there will always be all of you here and that's the biggest gain from having scleroderma.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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So sorry you had to miss out on this wonderful occasion Amanda. If it was because of your health or because of not getting an official invite being you are the step mom, either way it would/can hurt. There are many pains we endure during our lives all we can do is except what is and do the best with each and every situation as it comes along. I am happy to hear that your step son included you with words of love on his special day. I am glad you came on and voiced your thoughts. I have been away for 3 days so just returned and saw this post. I hope you were able to enjoy part of your day even if it was without close family members around.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Amanda,

You brought tears to my eyes when I read your post. I hope they create a photo album just for you. It is a shame you had to miss this occasion, but I hope they will come and visit you often and let you keep up with their life.

 

I have a cousin who has been disabled since before her boys were born, she is now in a wheelchair and turning 80 in a few weeks. I try to keep in touch because it is so important, and your story is a reminder to me that sometimes I don't try as hard as I should.

 

Lots of warm hugs from downunder to you.

 

JudyT

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Oh, Amanda, I'm feeling so choked reading your post!

 

Even though you couldn't be at your stepson's wedding in person, it sounds as if you were very much there in spirit and you should take comfort from the fact that you have such a lovely family and fantastic husband who obviously think the world of you. That's no mean feat to achieve as I'm sure many people would envy you for having that.

 

My biggest bonus of having Scleroderma was getting to know you and Michael and the other lovely people here. :you-rock:

 

Best wishes to you,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

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Thank you ladies, Sheryl I wasn't there because I just couldn't get out of bed...again! At the moment I spend more time asleep than awake because of the fatigue and I suspect that pain medications isn't helping this. I have now broken my record of 19 hours a sleep, it's now 21 hours...any takers?!

 

My stepson and daughter in law plan to come down for the day next month for a blessing so there is something to look forward to I guess.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Dear Amanda,

I've been staring at this post trying to think of what to write for a long time now. You've always been such an inspiration to me and others. I am sorry you had to miss out on that special occasion. I am saddened that this disease takes so much away from so many. I am amazed at what you DO despite it all.

 

:spoon: :emoticon-hug: :spoon:

 

miocean


ISN Artist

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Hello Miocean,

 

Thank you for the spoons, they are much appreciated! Being able to come here makes it all worthwhile.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

I'm very sorry you had to miss out on such a special occasion. Here are some warm, comforting hugs for you.

:emoticons-group-hug:

 

Actually, 21 hours a day or more was the norm for me for about a year, when I first became ill and before I was diagnosed. I was only able to be up a few minutes each day, and then usually in a wheelchair at that. Very gradually I was diagnosed in various bits and pieces and treatments gradually made me a bit better. Now I rejoice every day that I can be up and about at all.

 

Be sure to let your doctors know about it, of course. A million tiny things can lessen fatigue...but also the tiniest thing can set it off at times. I must say though in all that time, I never had to miss any major thing like that. In fact I felt pretty lucky and would count my blessings that I was not suffering any worse due to things like that. It's hard enough being laid up without being complicated by other factors, too. My heart goes out to you.

 

Here are some balloons to celebrate the good times virtually though!

 

:balloons:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Amanda I hope the fatigue has started to lessen for you. When it hits it seems like it will never go away. We do wonder how we can sleep so many hours. Barely able to get up off of the couch or bed and use the restroom and find something to eat or drink before the fatigue hits and the couch is calling us once again. Taking away most/all sugar and milk products seems to help me though it can sometimes last for many weeks. Three months was my longest run of fatigue. I wish we knew what brings it on or what to do to prevent its decent upon us. It would be helpful to understand what process is going on at the time with our bodies. I hope you are starting to feel better and up to making more videos for others to learn from.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Shelley I never thought I'd be glad to hear someone else slept as long as me but I am! At least I know that it's not just me if others have experienced it too, I just hoped that by year 4 it would be better not worse. I clocked up the 19 hours in year one and the 21 in year 4, it should go the other way surely! Monday I got up at 9:15 a.m. and did things around the house and I can't tell you how happy I was, I couldn't wait for Michael to come home so I could tell him what a great day I had. I thought that this particular fatigue fest was over but alas no, the revival lasted only Monday. I do wonder now if maybe I did too much?

 

Sheryl, your comment about having to fit in food and drink is so right. due to the lack of awake time and eating issues I have resorted to supplament drinks in order to at least get some nutrition. I have lost a lot of weight and don't want to! I must be the only woman ever to say that! Again knowing you had a three month fatigue run makes me feel better...sorry! Like I said in my first post on this topic being able to come here and share with all of you is the best thing ever.

 

I had hesitated about sharing this topic as I didn't want to bring people down but totally selfishly I am glad I shared it because I now feel less isolated and alone knowing that I am not the only one facing this. I also have to remember that I have heart failure contributing to my overall fatigue so what'ya expect?

 

Thank you all so much and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda, my first major holiday really sick, I was in bed, sleeping, literally 21 hours. I wasn't resting or eating or anything; probably not even bathroom trips as I wasn't up to eat or drink. Part of it was that I had severe insomnia so the sleep doctors pointed out that I wasn't really sleeping at all, at least not the deep sleep that we need to restore or feel refreshed, so it was like a merry-go-round of sleep and fatigue that would not let up, as sleep wouldn't help it.,

 

Finally I woke up long enough to get to the doctors and have sleep disorders testing. It was a lot to sort out, because when you are sick, just treatment for sleep problems still leaves an awful lot to be desired, energy-wise. Also I was having daily migraines then but didn't know it; all I knew was that I couldn't tolerate lights or noise or movement of any kind, for hours on end. It sounds silly, but I found it is possible to be so sick that the thought of going to the doctor sounds impossible, and those trips would exhaust me even more.

 

And what's worse is that in the grip of the worst fatigue, it is very hard to imagine that it will or could let up. It's easy to begin to seriously doubt if it ever will. Plus you never know how long it will stay, or be gone. Now I reassure myself that "It's just temporary, all things pass." I do believe that it helps to hold on tight to positive thinking even when we are tempted to feel despair, and to pace ourselves very carefully in the good times so that we have a more even distribution of useful time each day.

 

Luckily for me, my husband has been severely ill too for many years before his lung transplant, so he totally understands the importance of pacing and often he is the one to gently remind me that perhaps we should postpone some things until tomorrow, or maybe even next week and he doesn't go along with any brooding, which of course only makes bad matters even worse.

 

Hang in there. It usually gets better. And if it only gets worse, why then, you are experiencing some prime days now, eh?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Amanda and Shelley,

Reading your posts and comments about fatigue has got me thinking too. I do know about chronic fatigue and 'improper sleeping' (don't quite know what else to call it) as I have a friend who has serious Sjogrens and has been through the sleep clinic thing. I have been very, very tired for the past year really, although I don't come anywhere near the number of hours Amanda is sleeping, I think if I gave in more readily I might come close though.

 

My general practitioner has had me on a programme of reducing almost all my meds except for the Losec which we know is vital, in an attempt to sort out what might be the villain. Hasn't made a bit of difference, if anything I am worse :emoticon-dont-know: and I am getting fed up with it. More than anything it is the headaches that get to me. I have had 7 years on quite a few meds but NO headaches. Yesterday I got up at 9ish had breakfast, which included Panadol, back to bed at 11. Up again at 1 for lunch, staggered through a bit of gentle weeding then more Panadol, dinner and bed and today I can hardly even stand up. I am back to feeling that I am either getting a headache, got a headache or double vision, or getting over a headache.

 

Your post about the sleep clinic has made me think maybe I should suggest that we try that. I feel as though I am sleeping soundly but when I wake up it takes a while before I can walk very far. Have to keep sitting down for a rest. That really doesn't seem right to me. Thought maybe my blood pressure was getting too low but I am off all those meds. so it must be something else.

 

Thanks for your posts, it is so good to be able to get more ideas about what to try.

 

Any more good ideas will be carefully considered I can assure you.

 

Warm hugs from NZ

 

Judy T

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Shelley " I found it is possible to be so sick that the thought of going to the doctor sounds impossible" I know that one from my migraine days, being in so much pain that you do not want to move let alone get out of bed, down the stairs, into a car and go to hospital, wait to see the emergency doctor for a pain killing injection. Of course feeling and being sick at the same time made the thought of traveliing by car even more odeous.

 

Judyt, having escaped from years of migraines the one thing that strikes dread into me is a headache!

 

Yes it can and well get better, it's not always been like this and it won't always be! And now...to bed! :lol: :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

Aha, somebody who understands. So now I want to know what you did/do for the headaches/migraines. I used to get at least two a week if not three then when I got a diagnosis of Sclero and was put on meds for Raynauds and hypertension the headaches disappeared " poof :terrific: " just like that overnight.

 

7 peaceful years later and the headaches came back, caused I think by a sneaky change of medication by an organisation here who decide which meds get funded and which don't. Now when I try to tell those people who can do something about it they all say "impossible it's the same thing in a different form" and the other thing they love saying when I tell them it was Amlodipine which stopped the migraines is "impossible Amlodipine CAUSES headaches :nervous: and I am left feeling like this little guy without a friend in the world who will listen about the headaches.

People who don't get them have no idea what it is like, do they?

 

I could pay for the original medication but I can't get anybody to agree to prescribe it for me, and on top of that I am a little bit fearful of the cost, although I would be able to get over that it I could just get a prescription. I am working on my general practitioner so we will have to see how I go.

 

Perhaps you can give me a good tip about what to do.

 

Warm Hugs

 

Judy T

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Hello Judyt

 

It was the amlodipine without doubt. When I read in one of your early posts that amlodipine had helped your migraines I wanted to try and get on it and as it happened it was eventually prescribed as Ramipril was not bringing my blood pressure down as much as the doctor(s) wanted. When you have heart issues they get real insistent about controlling blood pressure!

 

As a young child I have migraines in my stomach, apparently common in children. I had them when I was about 14 but for some bizarre reason they were not diagnosed as such. Ma had migraines for years but she never got an official diagnosis either. When I was about 20 they came back and I lived with them for years, they went again for 7 years and then came back just a I was diagnosed with scleroderma, I was 39 at the time.

 

This time the migraines were excruciating so much so that if I could have been free of either the scleroderma or the migraines at that time, I would have chosen the migraines. I had to call my sister on one occasion to take me to hospital and she said she had never seen anyone in that much pain, it was the mother of all migraines and I was wandering around the bedrooms mumbling, half dressed rubbing arms! As I was vomiting I couldn't take my scleroderma medication and at that time my skin was unbearably itchy but I couldn't take anything to stop the itching.

 

I was also sick with the migraines this time round and never had been before so as well as having to go to hospital each time for a pain killing injection I had to take anti sickness medications, rarely worked though, and sumatriptan, again rarely worked. These migraines went on from 2007 for two/three years and I thought that my blood pressure was going up because I was in pain but I was in pain because my blood pressure was going up! Interestingly it wasn't that high, it would be around 130/90, high for me but not majorly high all things considered.

 

All I know is that from the moment I started taking amlodipine the migraines went straight away and have not returned. Under no circumstances would I stop taking amlodipine.

 

I hope this helps because you have my utmost sympathy if your migraines have returned, I can't actually think of anything worse..and I have scleroderma!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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After the doctors figured out that I have labile hypertension plus orthostatic intolerance, and severe insomnia, treatment and lifestyle modifications for those things somehow miraculously cured my daily migraines.

 

I am still susceptible to migraines that can be triggered by other things, however, I sometimes wonder if it isn't that the migraine hasn't already started and thus it seems as though the beat of the music or the harsh light or whatever is the trigger. Which came first, the chicken or the egg? I never know for sure what I can get away with that impacts fatigue, sleep, or migraines. All I know is that I need to be enormously flexible, with both my attitude and my schedule, so that I can accommodate the ups and downs as gracefully as possible.

 

I also found that it helps me not to talk about it or explain in endless detail to my spouse or others what it is like, in the throws of it. So I use the term "boots up" to let Gene know that I am down for the count, for whatever reason at all. For example, if he calls and asks how I am doing, I'll often say that I'm dynamite, but boots up, which means I am holding my attitude steady but that physically I am laid up, in bed, and down for the count. With those code words, he knows to move into adjustment mode and fills the gaps with whatever still needs to get done, such as mailing out awareness bracelets, bringing medications, fixing dinner, or whatever else it takes.

 

He appreciates not being burdened with the gory details, I appreciate not feeling obliged to explain so my mind is free to contemplate all the things I'd love to do when I feel a bit better, and life goes on as though it is the usual, and it remains just a little blip on the radar screen of a life permanently adjusted to health's ups and downs.

 

Many years ago, I encountered one of my neighbor's little boys sitting on the stoop outside our apartment building, quietly playing with his toys. I asked how he was doing, and he cheerily said, "I'm very happy but this is NOT one of my mom's GOOD days." Which is what our loved ones must surely be able to relate to, much of the time!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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When first diagnosed with scleroderma I would wake up on a morning and be thankful that at least I didn't have a migraine...now I am thankful to just wake up on a morning! :emoticons-yes:

 

There's always some good to be had out of the day (as in a 24 hour period of time) it's just that our appreciation of what to appreciate needs adjusting to accomodate the somewhat alternate lives we lead thanks to chronic illness. Hey, how many people would be excited to have vacuumed the downstairs on a Monday morning? I was last week let me tell you, I surely appreciate the "simple" things in life these days and I intend to continue doing so! :terrific:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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You Gals are THE BEST :emoticons-clap: I want to print off these posts and take them with me when I go back to my general practitioner in a week or two. So many things each of you have said are just what I have experienced since my very first migraine in November 1966. How's that for memory!! Just shows how significant an occasion it was. I will never forget it. Ian and I were living in a bedsit in Leicester (Anstey to be exact) and decided that day to drive to Nottingham to have a look around. We had only been in England since August that year so were just starting on our weekends of sightseeing. I couldn't figure out what was wrong. I think it took 10 years before anybody said it's migraine and gave me an appropriate medication.

 

Shelley you talk about labile hypertension - that's me but I have never heard the term orthostatic intolerance. Am off to look that one up the moment I get through with this.

 

Oh the joy of talking to people who understand. :emoticons-line-dance:

Better get off now and have my panadol and some breakfast.

 

Love and hugs from

Judy

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Shelley,

 

I looked up Orthostatic whatsit - seems to me that may be why I have to keep sitting down every few steps when I get up in the morning. Maybe it is why my legs threaten to let me down (literally) when I get out of the car and all sorts of other things that happen that puzzle me.

 

When I have talked about those things the only person who has responded was a cardiologist, years ago, who had me lie down for a few minutes then stand up and measure my blood pressure. His opinion was that it didn't drop significantly enough to make any difference. I think I just might do a bit more following up on that one.

 

Well that should just about fill up my week on top of all the other things I was planning to do.

 

Warm Hugs and thank you,

 

Judy T

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Hi Judy,

 

I had a bunch of neurological testing, including a Tilt Table test, to diagnose the orthostatic intolerance. In fact, I think that was the key, definitive test for it.

 

One of the ways that I manage it (there are a bunch) is that when I get this certain feeling (like an elevator dropping rapidly), I sit down immediately, no matter where I am and no matter what it takes. If I don't, I run the very real risk of passing out cold.

 

My husband has learned to take it completely in stride. It's more likely to happen in stores (from standing or just being upright too long), in which case I usually have to plop right down in the aisle. Other shoppers tend to look startled by it, but my husband merrily assures them that it's okay, "She does this all the time!" As though it's just another one of my quirky hobbies. :emoticon-dont-know:

 

Another method is to use wheelchairs and shopping "carts" for long distances, but after I infamously knocked down the Walmart glue gun display once, I tried to change gears in favor of just plopping. That way I get more exercise and incur less shopping display damage, so everyone is much happier overall.

 

Although I joke about it, it can be quite an impairment and put a big dent in lifestyle. It is worthwhile getting it diagnosed, and properly treated, as well as making lifestyle changes (get up slowly, eat salt, drink plenty of fluids, avoid certain meds, try to avoid situations that trigger the worst of it) having back-up plans for it, when all else fails.

 

Also, I think some people get orthostatic intolerance as a side effect of aging and certain medications. For me, I'm pretty sure it hangs around with my labile hypertension, as sort of the flip side of my blood pressure being simply dysregulated (both high and low and changing rapidly). They explained to me that repeatedly tripping the orthostatic intolerance can be a significant cause of fatigue, too, so just ignoring it really isn't an option.

 

Good luck to you in dealing with any issues related to it. Keep us posted on how it goes!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Shelley

 

I have just read your latest post on this thread and had a little giggle. I have a cousin who is in a wheelchair, she has post polio syndrome which comes on in later life very much like Motor Neurone Disease. Anyway I have always been quite happy to go out with her - until lately, I don't think I could even push her chair now - and we have had lots of fun over the years. I have always been very good at taking her into shops where there are things we want to look at, usually clothes as you can imagine. Some shops have no idea how hard it is to get around their displays until yours truly bowls down the aisle with the chair and boomp, boomp, boomp go the goods. Well, they should think about what they are doing when they set them up shouldn't they!!!!

 

I also understand how Gene feels when you go plop down in the aisle. My husband Ian is very good at fainting (syncope) at the drop of a hat. I react the same way as Gene - Oh don't worry he often does that!!!! Trouble is people often call an ambulance then we are hooked into the whole hospital visit thing. It was great one time when he fainted on an aircraft half way between Auckland and Brisbane. We were en route from NZ to Sweden at the time and all the time we were with Qantas we got right royal treatment, then once we left Singapore with Alitalia they couldn't care less!!! But it was fun while it lasted.

 

I have an appointment tomorrow with my general practitioner, I am still on this step by step programme back to getting on the right meds and the headaches are driving me crazy. She (GP) doesn't really want to see me yet, it is too soon after the last step in my meds, but I had such a terrible weekend that I just want her to know about it!! I took 5 doses of Migraine med. which knocks me around. Then on Sunday evening when we were waiting in a cafe for a meal I was caught by the most violent vertigo and just had to sit tight with my eyes closed and try to decide whether I was going to throw up or fall over. Needless to say the staff in the cafe packed our meals in takeaway boxes and ushered us out double quick.

 

I don't really think I have Orthostatic whatsit, even though I often have to sit down. I have never fainted or passed out in any way and when I have tested my BP while I am feeling weak it is often actually high not low so go figure. I have been thinking about it quite a bit since we last talked about it and I think it is just ME. The tilt table test sounds a bit like the test they use for BPV (benign positional vertigo) I know I get it but nobody has been able to bring it on in a test.

 

AH well!

 

Nice to hear from you.

I will see how I go.

 

Judy

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