Ke manaʻo nei ʻoe i ka luhi loa i ka lā a pau? Ala aʻe ʻoe me ka manaʻo luhi, a ʻaʻohe mea pehea ka nui o kou hiamoe ʻana i ka pō, ʻaʻole e nalowale kēlā luhi? I kekahi manawa manaʻo paha ʻoe he luhi wale nō kēia mai ka hana nui ʻana. Akā ʻoi aku ka paʻakikī ma mua o kēlā, a he maʻi olakino paha ia e pono ai kākou e makaʻala. I kēia lā e kamaʻilio mākou e pili ana i kēia ʻano luhi mau, i ʻike ʻia ma ke ʻano lapaʻau ʻo 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I kekahi manawa ua kapa ʻia ʻo 'Systemic Exertion Intolerance Disease (SEID)'.
I ka ʻōlelo maʻalahi, he ʻano kēia kahi e hoʻopiha pono ʻole ai ka pila o kou kino. Hoʻoluhi kēia iā ʻoe e hana i kāu mau hana o kēlā me kēia lā. I kekahi manawa, ʻoiai ka hana ʻana i kahi mea maʻalahi e like me ka hele ʻana i ka hale kūʻai, ka hana ʻana i kahi hana liʻiliʻi o ka hale, a i ʻole ke kākau ʻana i kahi leka hiki ke hoʻonui i kou mau hōʻailona. Hiki i kēia ʻano ke mau a hiki i 6 mau mahina, a i ʻole nā makahiki. ʻO ka mea nui loa , ʻaʻole e emi kēia luhi, ʻaʻohe mea i ka nui o ka hoʻomaha a me ka hiamoe maikaʻi āu e loaʻa ai.
Hiki i ke kauka ke kōkua iā ʻoe e ʻike i kēia kūlana a mālama i kāu mau hōʻailona, akā pono lākou e ʻike mua he maʻi ia.
He aha nā hōʻailona nui o kēia maʻi?
Inā loaʻa iā ʻoe ʻo ME/CFS, loaʻa iā ʻoe kēia mau hōʻailona "koʻikoʻi" ʻekolu. E nānā kākou i ke ʻano o lākou.
| ʻO ka hōʻailona nui | No ka wehewehe maʻalahi ... |
|---|---|
| Luhi hiki ʻole ke hoʻomanawanui | Ke manaʻo nei i ka luhi loa no nā mahina ʻeono a ʻoi, e paʻakikī ai ke hana i nā hana maʻamau o kēlā me kēia lā. He loli nui kēia i hoʻohālikelike ʻia me kāu i hana ai i kou ola ma mua. |
| ʻO ka Malaise Ma hope o ka Hoʻoikaika Kino (PEM) | ʻO kēia ka hiʻohiʻona ʻokoʻa loa o kēia maʻi. Ma hope o ka hana kino a noʻonoʻo paha (e.g., ka hele wāwae ʻana i kahi mamao pōkole, ka heluhelu ʻana i kahi puke), lilo nā hōʻailona i mea koʻikoʻi loa no nā hola a i ʻole nā lā. |
| Hiamoe hoʻomaha ʻole | ʻOiai inā loaʻa iā ʻoe kahi hiamoe maikaʻi i ka pō, manaʻo mau ʻoe ua make ʻoe ke ala ʻoe i ke kakahiaka. Manaʻo luhi, me he mea lā ua ala ʻoe i ka pō a pau. |
He aha ka Post-Exertional Malaise (PEM)?
He mea nui e wehewehe hou aku i kēia. E noʻonoʻo e hana ana i kahi hana maʻalahi āu e hana mau ai, e like me ka hoʻomaʻemaʻe ʻana i ka hale. Hiki i ke kanaka olakino ke manaʻo i kahi luhi iki, akā e nalowale ia ma hope o kekahi manawa. Eia nō naʻe, ʻo ke kanaka me ME/CFS, ma hope o ka hana ʻana i kēlā hana maʻalahi, ma hope paha o 12-48 mau hola, hiki ke ʻike koke i nā hōʻailona e like me ke ʻeha nui o ke kino, ka ʻeha poʻo, ka paʻakikī o ka noʻonoʻo ʻana, ka ʻeha ʻāʻī, a me ka luhi nui . Hiki i kēia ʻano ke mau no nā lā, a hiki i nā pule.
Nā hiʻohiʻona ʻē aʻe e pono ai no ka hōʻoia ʻana
Ma waho aʻe o nā hōʻailona nui ʻekolu i ʻōlelo ʻia ma luna, no ke kauka e ʻike pololei i ka ME/CFS, pono ʻoe e loaʻa i hoʻokahi o nā hōʻailona ʻelua ma lalo nei.
- Nā pilikia noʻonoʻo:
Ua kapa ʻia kēia e ka poʻe he "noe lolo." ʻO ia hoʻi, he pilikia kou i ka noʻonoʻo ʻana, ʻaʻole hiki ke noʻonoʻo pono, pilikia ʻoe i ka loaʻa ʻana o nā huaʻōlelo, ʻaʻole hiki ke hoʻomanaʻo i nā mea hou, a lohi kou wikiwiki noʻonoʻo. Me he mea lā ua uhi ʻia kou poʻo i ka noe.
- ʻOi aku ka ʻino o nā hōʻailona i ke kū ʻana a i ʻole ka noho ʻana (Orthostatic Intolerance):
ʻO ka mea e hana ʻia ma kēia hihia, ʻoi aku ka ʻino o nā hōʻailona ke kū ʻoe a noho pololei paha no kekahi manawa. Manaʻo ʻoe ua poniuniu, ua ʻeleʻele kou ʻike, ua nāwaliwali ʻoe, ua pōwehiwehi kou ʻike, a manaʻo paha ʻoe he mau mea lana i mua o kou mau maka. ʻO ia ke kumu e manaʻo pinepine ai ʻoe e like me ʻoe e hiolo ana.
Āhea mākou e ʻike ai i ke kauka?
Inā loaʻa iā ʻoe kekahi a ʻoi aku paha o nā hōʻailona i ʻōlelo ʻia ma kēia ʻatikala, ʻoiai inā ua mau ka luhi no nā mahina, mai manaʻo wale he luhi wale nō ia. He mea kēia e pono ai ʻoe e kamaʻilio me kāu kauka.
I kekahi manawa hiki ke hana ʻia kēia mau hōʻailona e nā maʻi ʻē aʻe, e like me nā pilikia thyroid, anemia, a me ke kaumaha. No laila, he mea nui loa ia e ʻike i ke kumu maoli o kēia mau hōʻailona. ʻO ke kauka wale nō ke hana i kēlā.
Ke hele ʻoe e ʻike i kāu kauka, e hōʻoia e wehewehe i nā mea āpau e pili ana i kāu mau hōʻailona, me ka lā i hoʻomaka ai lākou, ka wā i ʻoi aku ai ka ʻino (PEM), a me kāu mau ʻano hiamoe. Inā pono, e kākau i kēia mau mea i loko o kahi puke liʻiliʻi. E kōkua kēia i ke kauka e hoʻomaopopo i kou kūlana.
Hiki iā ʻoe ke nīnau i kāu kauka e pili ana i kona ʻike i ka mālama ʻana iā ME/CFS. ʻOiai he ʻano paʻakikī kēia, makemake paha ʻoe e noi i kahi kuhikuhi i kekahi kauka ʻē aʻe i loea i kēia wahi. Mai makaʻu e kamaʻilio e pili ana.
Leka Lawe-Home
- ʻAʻole wale ka luhi o ka Chronic Fatigue Syndrome (ME/CFS). He maʻi olakino koʻikoʻi ia no ka wā lōʻihi e hiki ke hoʻopilikia nui i kou ola o kēlā me kēia lā.
- ʻO nā hōʻailona nui ʻekolu, ʻo ia ka luhi nui e mau ana ma mua o 6 mau mahina, ka ʻoi ʻana o nā hōʻailona ma hope o ka hana liʻiliʻi (PEM), a me ka hiamoe hōʻoluʻolu ʻole.
- Eia kekahi, he mea maʻamau nā pilikia hoʻomanaʻo a me ka noʻonoʻo (noe lolo) a i ʻole nā hōʻailona e ʻoi aku ka ʻino i ke kū ʻana (orthostatic intolerance).
- Inā loaʻa iā ʻoe kēia mau hōʻailona, mai hoʻowahāwahā iā lākou. E hōʻoia e ʻike i kāu kauka no ka ʻike kūpono a me ke alakaʻi.
- Nui nā ʻano e mālama ai i kēia maʻi. No laila, mai nalowale ka manaʻolana. ʻO ka hana mua a koʻikoʻi loa, ʻo ia ke ʻimi i ke aʻo lapaʻau.
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